Genetic Testing Companies Sell Your DNA, All Promise Of Privacy Is Bunk

[BemusedObserver]

Sergey Brin, who is one of the founders of Google; his wife is the CEO of 23andMe, a DNA testing company. Now aint that some ***t

Dang, not really that surprised though...DIABOLICAL

 

[Rachel]

Wow. And uggggggggggh. I purchased a DNA test from Ancestry last December and I haven't taken it because of my suspicions that some funny (dangerous) stuff might be going on. Thank you for the confirmation, Haidut.

 

[Rachel]

Sergey Brin, who is one of the founders of Google; his wife is the CEO of 23andMe, a DNA testing company. Now aint that some ***t

Ewwwww.

 

[Waynish]

Way too dangerous IMO. I think it has a high potential to send a person to jail. If the person doing this is not a journalist (and even for them it would e quite dangerous) they can be charged with a number of offenses at the state and even federal level.

It doesn't seem very illegal to buy information that is for sale... Here's a more PC version: fund journalists to buy their own data and show them how it could be used against them.

 

[Serene]

They already have mine. There was a plant in my car one time...

 

[lollipop]

Sergey Brin, who is one of the founders of Google; his wife is the CEO of 23andMe, a DNA testing company. Now aint that some ***t

OMG.

 

[achar45]

I wanted to get tested and just used a fake name...it takes 5 minutes to open an email address...many people are doing it this way

 

[fradon]

maybe they are looking rh negative types...

 

[Badger]

There is a way to get around a credit card revealing your identity (assuming DNA services don't prohibit you from using these services): use a virtual credit card that masks your identity and personal details. One such is at this URL: https://privacy.com/
The pro on this is it is free to use, but the con is you have to connect it to your bank account, which is where payment comes from of what you are ordering. But as stated. the merchant does NOT know who you are, a very big plus. You can always add another bank account to use such services with if you are super-cautious.

Another service that's similar is called "Blur." This one costs, but it creates a unique credit card number on the fly and also hides your identity from the merchant:
Abine Blur: passwords, payments, & privacy
You can get much more details on these and similar credit card masking services from this superb book on computer security and privacy (authors also have a great weekly podcast on privacy and computer security):
https://www.amazon.com/Complete-Privacy-Security-Desk-Reference/dp/152277890X/ref=sr_1_1?s=books&ie=UTF8&qid=1508724020&sr=1-1&keywords=the+complete+privacy+&+security+desk+reference
Start at page 199.

Yes, and some people have been doing it but since you pay with a credit card, usually they still know it is you. So, you'd have to use someone else's card or a prepaid one if you want to be anonymous. Of course, not to be outdone, these companies are well aware that some people will try to stay anonymous and usually have a clause in the terms of service saying you agree NOT to do that. Not sure what the legal ramifications are and if they can be enforced if you do not comply but at the very least it shows you the companies are expecting people to get scared and start lying about their identity so they try to prevent that. Why would people get scared of using somebody's service if tat service was totally benign and legit...

 

[lollipop]

There is a way to get around a credit card revealing your identity (assuming DNA services don't prohibit you from using these services): use a virtual credit card that masks your identity and personal details. One such is at this URL: https://privacy.com/
The pro on this is it is free to use, but the con is you have to connect it to your bank account, which is where payment comes from of what you are ordering. But as stated. the merchant does NOT know who you are, a very big plus. You can always add another bank account to use such services with if you are super-cautious.

Another service that's similar is called "Blur." This one costs, but it creates a unique credit card number on the fly and also hides your identity from the merchant:
Abine Blur: passwords, payments, & privacy
You can get much more details on these and similar credit card masking services from this superb book on computer security and privacy (authors also have a great weekly podcast on privacy and computer security):
https://www.amazon.com/Complete-Privacy-Security-Desk-Reference/dp/152277890X/ref=sr_1_1?s=books&ie=UTF8&qid=1508724020&sr=1-1&keywords=the+complete+privacy+&+security+desk+reference
Start at page 199.

Interesting @Badger, thank you for sharing this.

 

[Seleniodine]

Hi there, long time lurker here, time to jump in with my first post. This form of identity obfuscation may be useful in other transactions but I'm not sure it will ensure anonymity with DNA testing.
If "they" already have your DNA gathered without your consent from other previous lab tests in your real name (as surmised above) then it will be a trivial matter to match it with your fake name DNA test results.

There is a way to get around a credit card revealing your identity (assuming DNA services don't prohibit you from using these services): use a virtual credit card that masks your identity and personal details. One such is at this URL: https://privacy.com/
The pro on this is it is free to use, but the con is you have to connect it to your bank account, which is where payment comes from of what you are ordering. But as stated. the merchant does NOT know who you are, a very big plus. You can always add another bank account to use such services with if you are super-cautious.

Another service that's similar is called "Blur." This one costs, but it creates a unique credit card number on the fly and also hides your identity from the merchant:
Abine Blur: passwords, payments, & privacy
You can get much more details on these and similar credit card masking services from this superb book on computer security and privacy (authors also have a great weekly podcast on privacy and computer security):
https://www.amazon.com/Complete-Privacy-Security-Desk-Reference/dp/152277890X/ref=sr_1_1?s=books&ie=UTF8&qid=1508724020&sr=1-1&keywords=the+complete+privacy+&+security+desk+reference
Start at page 199.

 

[Seleniodine]

A story on CBS This morning , today, reports on genetic testing being offered to new parents in Boston at Brigham and Women's hospital as part of a landmark study that, "could lead to gene scans for all infants at birth".

Genetic counselor approaches parents the day after baby is born.... (why not in the 9 months preceding?)

Dr Robert Green is a medical geneticist at Harvard and a co-director of the BabySeq project.
In the story even he expresses concerns over potential discrimination and privacy issues in the future and says; "most importantly we can't predict that the information is accurate."

The real kicker is that ;
"BabySeq is part of a $25 million effort funded by the National Institutes of Health. The genetic data collected will be housed in an academic lab and the participants DO have to consent to having it uploaded to a Federal database for possible future research......"

 

[Such_Saturation]

Hi there, long time lurker here, time to jump in with my first post. This form of identity obfuscation may be useful in other transactions but I'm not sure it will ensure anonymity with DNA testing.
If "they" already have your DNA gathered without your consent from other previous lab tests in your real name (as surmised above) then it will be a trivial matter to match it with your fake name DNA test results.

I think we are worrying about crappy future insurance laws, not full blown 1984.

 

[Badger]

You are likely right, but obfuscation will still work for those of us who have not yet received genetic testing.

Hi there, long time lurker here, time to jump in with my first post. This form of identity obfuscation may be useful in other transactions but I'm not sure it will ensure anonymity with DNA testing.
If "they" already have your DNA gathered without your consent from other previous lab tests in your real name (as surmised above) then it will be a trivial matter to match it with your fake name DNA test results.

 

[Seleniodine]

Ha ha, yes , I may be overly concerned about the privacy aspect in this regard, maybe more like Gattaca?
The next generation of people born into this world will probably never even give it a second thought.....

I think we are worrying about crappy future insurance laws, not full blown 1984.

 

[Frankdee20]

This is so interesting, great job.

 

[haidut]

the participants DO have to consent to having it uploaded to a Federal database for possible future research

I have hard time keeping myself from laughing. As if the feds need or will ask for your permission. Anything is up for grabs with a single National Security Letter. And since NIH is part of the federal government there is no need to even send such letters. NIH will be told by a presidential directive to give access for "legitimate government business" as it is usually called. The NSA spied on Americans illegally for years, and keeps doing so even today. Does anybody believe a law will stop the federal government from doing what it wants? The only hurdle on their way is that the DNA data is still not collected from everybody. This is how it needs to stay IMHO.

 

[Badger]

Another reason to be extremely cautious about using DNA profile services:
Police can legally use 23andMe, other ancestry tools to obtain your DNA
Police can legally use 23andMe, other ancestry tools to obtain your DNA

 

[timr]

According to their CS: Anyone care to interpret if that means your data is secure or not, really?

Hello,

Thank you for contacting the 23andMe Team.

When you register your sample to your 23andMe account, you will be given the option to consent or decline consent to the Biobanking Consent Document.

If you decline Biobanking consent, you do not give 23andMe permission to store your sample or perform additional analyses. Your saliva samples and DNA are destroyed after the laboratory completes its work, unless the laboratory's legal and regulatory requirements require it to maintain or use your sample under federal regulations, the Clinical Laboratory Improvement Amendments (commonly referred to as CLIA).

As stated in our Privacy Statement and Terms of Service, we do not sell, lease, or rent your individual-level Personal Information without asking for and receiving your explicit consent. We will not otherwise release your information without your explicit consent, unless required by law. We are committed to providing a secure, user-controlled environment for our Services.

You can find links to our Terms of Service, Privacy Statement, and Research Consent Document at the bottom of each page on our website. The links are provided below for your reference:

Terms of Service: DNA Genetic Testing & Analysis - 23andMe
Privacy Statement: DNA Genetic Testing & Analysis - 23andMe
Research Consent Document: DNA Genetic Testing & Analysis - 23andMe

Please let me know if you have any additional questions.

Best regards,

 

[Mito]

Another reason to be extremely cautious about using DNA profile services:
Police can legally use 23andMe, other ancestry tools to obtain your DNA
Police can legally use 23andMe, other ancestry tools to obtain your DNA

If they have a warrant for your DNA, they don’t need a 23andMe report to get your DNA.