Current Events > Turns out your can't remove your DNA from a genetic site once submitted.

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P4wn4g3
06/21/18 3:22:51 PM
#1:


https://www.bloomberg.com/news/articles/2018-06-15/deleting-your-online-dna-data-is-brutally-difficult

In the name of journalism, I have spit into a lot of test tubes.

Ive sent samples of my saliva to Ancestry and 23andMe Inc. to find out about my heritage; mailed my spit to Helix for insight into my athletic ability, diet and sleep patterns; and uploaded my DNA to the website of a startup that said it could craft a skin care routine genetically optimized to give me perfect skin.

Overall, Ive shared my genetic information with nearly a dozen companies. You might call me an oversharer.

Im not alone. The direct-to-consumer genetic-testing industry has grown from some $15 million in sales in 2010 to more than $99 million in 2017, and is projected to reach $310 million by 2022, according to one industry estimate.

Your genetic code includes details about not only your own health and family, but also similarly intimate information about your relatives. When police recently used a genetic genealogy website to find a suspect in the case of the Golden State Killer, it illuminated the unexpected ways that your genetic data can be used by people you had no idea you were sharing it with.

Recently, I started feeling uneasy about how freely my DNA data flowed. So I decided to try to erase my DNA data footprint from all the websites and databases and laboratories in which it was stored. It turns out that isnt so easy.

When you send your DNA to consumer genetic-testing companies, the sample typically is stripped of identifying details and sent to a third-party laboratory. There, DNA is extracted and purified from your saliva and analyzed. Then the anonymized data is stored and the sample is stashed for future tests.

Most companies privacy policies and terms of service assert the right to share data with business partners or law enforcement, if compelled. If you agree to take part in research, your information can be shared with groups involved in scientific studies.

The language in their policies permits selling or sharing information with third parties in many cases. That could be, in theory, anyone, James Hazel, a researcher at Vanderbilt University who surveyed the privacy policies of 90 direct-to-consumer genetic-testing companies for a forthcoming paper in the Cornell Journal of Law and Public Policy, said in an interview with Bloomberg.

It was possible my data was stored in places I might not have any way to know about.

I started with Ancestry.com, which offers DNA-based insights into your family tree. Deleting my data there was simple: With a click, it disappeared from view. But to get my sample destroyed, I had to call.

The customer-service representative I spoke with had never deleted a sample and had no idea how to. After 20 minutes, she said shed completed my request. She assured me that Ancestry would keep no record of my genes, that my sample would be destroyedwhen, she didnt sayand that Id receive an email confirmation.

A follow-up call a week later revealed only that things were in process.

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_BlueMonk
06/21/18 3:23:56 PM
#2:


who cares
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Bad_Mojo
06/21/18 3:24:22 PM
#3:


Just another way you people are getting fooled into getting tracked by the government
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P4wn4g3
06/21/18 3:24:26 PM
#4:


Next, I tackled 23andMe, wherealong with family informationcustomers can get information about disease risk and other aspects of their health. After a long time clicking around the site, I found an email address to send in my request. But I was told that the tools for deleting my data and sample from 23andMes records were not currently available. I had to wait until May 25, when the company planned to roll out new privacy tools in compliance with Europes data-protection regulations, the GDPR.

On the morning of May 25, 23andMes email arrived, heralding how easy it now was to delete your data. There was just one caveat: You cant fully delete it.

For one thing, Id agreed to contribute my information to research, and the company couldnt retract it from studies in progress. And there was another problem: Deleting my genetic information at my request is against federal law. 23andMe, and any other company that uses facilities meeting federal standards for clinical laboratories, cant just toss out your data.

The federal Clinical Laboratory Improvement Amendments (CLIA) of 1988 and California laboratory regulations require the lab store your de-identified genotyping test results and to keep a minimal amount of test result or analysis information, an email from 23andMe said. Our laboratory will retain your genetic information and a randomized identifier on their secure servers for a limited period of time, 10 years pursuant to CLIA regulations.

Fourteen frustrating customer-service emails later, I ascertained that the minimal amount of information the company was required to keep on hand was, essentially, all of my raw genetic information. 23andMe may tell you that you can delete your data, but in reality, the law says you cant.

A spokesperson from the Centers for Medicare and Medicaid Services, which oversees CLIA regulations, confirmed this. The regulations are meant as a form of quality control. If something goes wrong with a laboratory test, CMS wants to be able to figure out why.

If a laboratory subject to CLIA regulations performs a test, all records pertaining to the performed test must be retained for at least two years, a CMS spokesperson said. Most of the major consumer DNA-testing companies that offer health-related services use CLIA-certified labs.

Still, I decided to see what the other companies I tested with had to say.

Customer-service representatives at Orig3n, which recently began using a CLIA lab after getting a scolding from the federal government, assured me that somehow all my data would be deleted. Helix confirmed that it may retain backup copies and archival files to meet regulatory requirements, then stopped responding to my inquiries.

Helix, which bills itself as the app store for DNA, processes the DNA sample and then shares the relevant data with other companies from which consumers purchase tests for interpretation. I had tested with three companies on the Helix platform.

Only one, Exploragen, told me it would delete my information entirely. DNAfit told me it would retain some of my information for legal and regulatory purposes. Everlywell told me that, while they could remove my results from my account so that I could not access them, the results remain stored on the back end due to regulatory reasons.

This seemed to spell it out most clearly: When you delete your DNA information, you are mainly hiding your information from yourself.

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P4wn4g3
06/21/18 3:24:48 PM
#5:


Major DNA testing companies are changing their ways. Where, for example, Ancestry used to say that it holds a royalty-free, worldwide, sublicensable, transferable license to host, transfer, process, analyze, distribute, and communicate your Genetic Information, it now spells out that users own their data, with the company keeping certain rights to it.

Hazel, the researcher studying the privacy policies, said even if a company did offer to delete all your data, its unlikely that it could really purge your information from all the places it had already wound up.

They've already bundled it with other users data and stripped it of your name and aggregated it, and either sold it or shared it with other third parties, he said.

Even that kind of anonymity might not be enough to shield your information from prying eyes. In two studies in 2013, researchers showed it was possible to identify people from anonymous DNA information.

Its a lesson were destined to keep learning: Once you share something online, you cant really ever unshare it.

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P4wn4g3
06/21/18 3:30:30 PM
#6:


_BlueMonk posted...
who cares

Anyone considering doing this, or that has done it.
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_BlueMonk
06/21/18 3:34:01 PM
#7:


P4wn4g3 posted...
Anyone considering doing this, or that has done it.

ive done it

what are they gonna do

clone me?
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masterpug53
06/21/18 3:37:17 PM
#8:


_BlueMonk posted...
P4wn4g3 posted...
Anyone considering doing this, or that has done it.

ive done it

what are they gonna do

clone me?


I'll bet you won't be so smug when you're in the classic standoff with your clone, trying to convince your shellshocked loved one who's pointing a gun at you that you're the real BlueMonk.
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kingdrake2
06/21/18 3:39:18 PM
#9:


Bad_Mojo posted...
Just another way you people are getting fooled into getting tracked by the government


conspiracy theory: they're going to clone us all.
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Zikten
06/21/18 3:42:46 PM
#10:


this is bad. anyone who doesn't think so, doesn't realize the implications. it's never good when the government or other groups have too much info on you. even if you think they are benign, that can always change. what if there is a government coup and someone bad gets ahold of the info? people who say "I have nothing to hide" aren't thinking ahead
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SpinKirby
06/21/18 3:43:18 PM
#11:


Does it really matter though?

You'd have to be specifically scared of getting cloned.
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catboy0_0
06/21/18 3:45:21 PM
#12:


masterpug53 posted...
I'll bet you won't be so smug when you're in the classic standoff with your clone, trying to convince your shellshocked loved one who's pointing a gun at you that you're the real BlueMonk.

trust no one, not even yourself
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DarkChozoGhost
06/21/18 3:45:25 PM
#13:


It's gonna be a problem in a generation or two, thanks to insurance companies (100% of which are evil).
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SpinKirby
06/21/18 3:47:39 PM
#14:


DarkChozoGhost posted...
It's gonna be a problem in a generation or two, thanks to insurance companies (100% of which are evil).


"Sorry, we have to charge you higher since you have the genetic marker for fucking shit up."

lolno

We aren't even that fucking close to being accurate, even though we've map the the human genome quite awhile ago.
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P4wn4g3
06/21/18 3:47:48 PM
#15:


You can do way more than cloning. The example in the article was a serial killer being traced by the government. But there are other potential concerns. For example, Monsanto has been wanting to own the entire genome of the known universe for a while and profit off of it. And of course if the data can't be removed this stuff can be preserved for decades, meaning tech can come out that will be able to detect say, if you are of a certain ethnicity, and suggest or refuse services based off that.
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NeverOffended
06/21/18 3:48:19 PM
#16:


saliva samples don't last that long though
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Foppe
06/21/18 3:49:28 PM
#17:


Bad_Mojo posted...
Just another way you people are getting fooled into getting tracked by the government

>implies the Government doesnt already got your DNA and social numbers
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P4wn4g3
06/21/18 3:50:05 PM
#18:


Maybe not, but they put it into an "anonymous" database that can be linked back to you regardless.
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masterpug53
06/21/18 3:51:13 PM
#19:


SpinKirby posted...
We aren't even that fucking close to being accurate, even though we've map the the human genome quite awhile ago.


Something tells me that insurance companies don't need a 100 percent accurate excuse to bleed one dry.
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P4wn4g3
06/21/18 3:51:16 PM
#20:


Oh and as far as MFA goes you can kiss your biological verification goodbye if you've done a DNA test.
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NeverOffended
06/21/18 3:52:36 PM
#21:


mfa?
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SpinKirby
06/21/18 3:52:49 PM
#22:


P4wn4g3 posted...
The example in the article was a serial killer being traced by the government.


So serial killers should be scared. Thanks for the heads up.

P4wn4g3 posted...
For example, Monsanto has been wanting to own the entire genome of the known universe for a while and profit off of it. And of course if the data can't be removed this stuff can be preserved for decades, meaning tech can come out that will be able to detect say, if you are of a certain ethnicity, and suggest or refuse services based off that.


Monsanto is a whoooooooooole nother issue to begin with, but it doesn't have much to with this specific scenario.

The only thing people should be scared of would be if someone started advertising the fuck of out eugenics, but AGAIN...gene databases still aren't accurate enough for this shit because there's literally too much data atm.

https://en.wikipedia.org/wiki/HERC2 Imagine reading this page, but x100000000000000
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SpinKirby
06/21/18 3:55:35 PM
#23:


masterpug53 posted...
SpinKirby posted...
We aren't even that fucking close to being accurate, even though we've map the the human genome quite awhile ago.


Something tells me that insurance companies don't need a 100 percent accurate excuse to bleed one dry.


Implying you couldn't just claim disability because your great great grandfather has the shitty back gene.
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P4wn4g3
06/21/18 3:56:57 PM
#24:


NeverOffended posted...
mfa?

Multi Factor Authentication, for example putting in a password and using a fingerprint. Already insecure but the idea would be if you stick this out on unknown databases permanently it will never be secure.
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P4wn4g3
06/21/18 4:05:01 PM
#25:


SpinKirby posted...
..gene databases still aren't accurate enough for this shit because there's literally too much data atm.

https://en.wikipedia.org/wiki/HERC2 Imagine reading this page, but x100000000000000

Quantum Computing/AIs should solve this problem, and that's probably not very far away at this point.
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SpinKirby
06/21/18 4:08:12 PM
#26:


P4wn4g3 posted...
SpinKirby posted...
..gene databases still aren't accurate enough for this shit because there's literally too much data atm.

https://en.wikipedia.org/wiki/HERC2 Imagine reading this page, but x100000000000000

Quantum Computing/AIs should solve this problem, and that's probably not very far away at this point.


Oh, it does.

Back when I worked in a lab, I think it only took a week to totally map out any sample you wanted. You just extracted the DNA, then sent it off to a lab to be analyzed.

The issue is figuring out what gene actually does and when it activates.
Then there's whole controversy of whether or not junk DNA exists.
Hell, I remember it was specifically part of my research that a certain genome had adapted through self-termination upon any mutation.
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P4wn4g3
06/21/18 4:14:07 PM
#27:


Again I'm not really arguing there is much of an issue today. I'm saying the laws and policies are apparently very ambiguous around this, and its unlikely they will easily change should everyone eventually sign up for voluntary testing, which at that point its just a matter of time for technology to catch up to have an out of control problem.
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SpinKirby
06/21/18 4:19:18 PM
#28:


It could easily be an issue in less than a decade, if we seriously funded genetic research, but it's going to be a long fucking time...realistically...before we reach the point where people refuse to hire or date you without publishing your relevant genes to them.

What a life that would be. lol
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HiddenLurker
06/21/18 4:29:25 PM
#29:


masterpug53 posted...
_BlueMonk posted...
P4wn4g3 posted...
Anyone considering doing this, or that has done it.

ive done it

what are they gonna do

clone me?


I'll bet you won't be so smug when you're in the classic standoff with your clone, trying to convince your shellshocked loved one who's pointing a gun at you that you're the real BlueMonk.

Please the clone will be all "gotta shoot us both it's the only way". And after they both get killed a second clone will show up going "I am the REAL one". And nobody will be all the wiser.
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tamashiini
06/21/18 4:35:26 PM
#30:


Bad_Mojo posted...
Just another way you people are getting fooled into getting tracked by the government

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Bad_Mojo
06/21/18 4:37:42 PM
#31:


Foppe posted...
Bad_Mojo posted...
Just another way you people are getting fooled into getting tracked by the government

>implies the Government doesnt already got your DNA and social numbers


If they have everyone's DNA, why don't they catch criminals more easily? There are a lot of unsolved crimes that have DNA evidence.
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Foppe
06/21/18 4:56:33 PM
#32:


Bad_Mojo posted...
Foppe posted...
Bad_Mojo posted...
Just another way you people are getting fooled into getting tracked by the government

>implies the Government doesnt already got your DNA and social numbers


If they have everyone's DNA, why don't they catch criminals more easily? There are a lot of unsolved crimes that have DNA evidence.

Same reason the police have trouble unlocking iPhones even if CIA knows how to do it.
Solving crimes is a too low priority and not worth spreading what they got for.
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HydraSlayer82
06/21/18 5:01:19 PM
#33:


Someone beat me to the insurance angle.
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Kineth
06/21/18 5:03:13 PM
#34:


Bad_Mojo posted...
Just another way you people are getting fooled into getting tracked by the government


This
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Kitt
06/21/18 5:06:41 PM
#35:


That's a great opening line.
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masterpug53
06/21/18 5:12:53 PM
#36:


SpinKirby posted...
masterpug53 posted...
SpinKirby posted...
We aren't even that fucking close to being accurate, even though we've map the the human genome quite awhile ago.


Something tells me that insurance companies don't need a 100 percent accurate excuse to bleed one dry.


Implying you couldn't just claim disability because your great great grandfather has the shitty back gene.


That was actually an ironically poor example on your part, because I know from experience how hard it's been for a relative to get disability pay and proper pain management for their spinal debilitations, even though not a single one of their doctors (personal or insurance-mandated) hesitated to categorize said back as spectacularly fucked.
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SpinKirby
06/21/18 5:16:08 PM
#37:


masterpug53 posted...
ironically poor example


Are you calling me POOR because of my POOR genes?
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DarkChozoGhost
06/21/18 5:19:59 PM
#38:


You're severely underestimating how powerful and how evil insurance companies are.
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Nuffinz0rz
06/22/18 12:07:05 PM
#39:


bahahah i can't believe people didn't expect this would happen
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