Major DNA testing company sharing genetic data with the FBI

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ddd75

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The decision by a prominent consumer DNA-testing company to share data with federal law enforcement means investigators have access to genetic information linked to hundreds of millions of people.

FamilyTreeDNA, an early pioneer of the rapidly growing market for consumer genetic testing, confirmed late Thursday that it has granted the Federal Bureau of Investigation access to its vast trove of nearly 2 million genetic profiles. The arrangement was first reported by BuzzFeed News.

Concerns about unfettered access to genetic information gathered by testing companies have swelled since April, when police used a genealogy website to ensnare a suspect in the decades-old case of the Golden State Killer. But that site, GEDmatch, was open-source, meaning police were able to upload crime-scene DNA data to the site without permission. The latest arrangement marks the first time a commercial testing company has voluntarily given law enforcement access to user data.

The move is of concern to more than just privacy-minded FamilyTreeDNA customers. One person sharing genetic information also exposes those to whom they are closely related. That's how police caught the alleged Golden State Killer. A study last year estimated that only 2 percent of the population needs to have done a DNA test for virtually everyone's genetic information to be represented in that data.
Doubling Data

FamilyTreeDNA's cooperation with the FBI more than doubles the amount of genetic data law enforcement already had access to through GEDmatch. On a case-by-case basis, the company has agreed to test DNA samples for the FBI and upload profiles to its database, allowing law enforcement to see familial matches to crime-scene samples. FamilyTreeDNA said law enforcement may not freely browse genetic data but rather has access only to the same information any user might.

"The FBI does not have unfettered access to the FamilyTreeDNA database," Bennett Greenspan, the company founder and chief executive officer, said in a statement.

The genealogy community expressed dismay. Last summer, FamilyTree DNA was among a list of consumer genetic testing companies that agreed to a suite of voluntary privacy guidelines, but as of Friday morning, it had been crossed off the list.

"The deal between FamilyTreeDNA and the FBI is deeply flawed," said John Verdi, vice president of policy at the Future of Privacy Forum, which maintains the list. "It's out of line with industry best practices, it's out of line with what leaders in the space do and it's out of line with consumer expectations."

Some in the field have begun arguing that a universal, government-controlled database may be better for privacy than allowing law enforcement to gain access to consumer information.

FamilyTreeDNA said its lab has received "less than 10 samples" from the FBI. It also said it has worked with state and city police agencies in addition to the FBI to resolve cold cases.

"The genealogy community, their privacy and confidentiality has always been our top priority," the company said in an email response to questions.

Consumer DNA testing has become big business. Ancestry.com and 23andMe Inc. alone have sold more than 15 million DNA kits. Concerns about an industry commitment to privacy could hamper the industry's rapid growth.

Since the arrest of the suspected Golden State Killer, more than a dozen other suspects have been apprehended using GEDmatch. By doubling the amount of data law enforcement have access to, those numbers are sure to surge.

"The real risk is not exposure of info but that an innocent person could be swept up in a criminal investigation because his or her cousin has taken a DNA test,'' said Debbie Kennett, a British genealogist and author. "On the other hand, the more people in the databases and the closer the matches, the less chance there is that people will make mistakes.''
 
If anybody in your family tree has DNA on file they will find you. Most kids thinks it is groovy to do this. My daughter, sisters daughters have it on file and I have the kit and have never sent it in for the ancestry and medical genetic testing. The medical is pretty interesting as I read my daughters. It is very accurate as past problems of some family members it points that out in the genetic testing.
 
I posted a response to a similar thread a few months ago. When you use these consumer testing companies there is always a provision in the small print that says that by agreeing to use them that the DNA "results" become their property.

The concern I have is not the FBI being able to find me, but the DNA testing companies selling my information to Insurance Companies that may use it to deny coverage because they say I have a gene that indicates a potential for developing some disease (heart disease, cancer, diabetes, high cholesterol, pulmonary disease or even the heartbreak of psoriasis). They can then deny coverage to me or my family even though I have no such disease or and may never even get it.

Technology can be a wonderful thing, but there is always a dangerous side that someone or corporation will try to exploit for profit.
 
Hook2.0 said:
Bestoutwest said:
There should be no cause for concern unless you've got something to hide....

That's an interesting take on it. No privacy concerns at all? :roll:

I've never done anything that required my DNA to verify my guilt or innocence. It's not as if they're sharing it with insurance companies. That's a different take. What concerns do you have? Ie. what are you guilty of?
 
My insurance company has not ask for DNA yet, just a matter of time IMO before they will and can, but threatened to cost more if I don't enroll in the www.go365.com plan to were I exercise so much, get in good shape, keep the numbers between the lines, etc. My last regular doctor visit I did have a form for the doctor to complete to send to the insurance company showing results as another way to keep from paying more for the insurance.
 
Hook2.0 said:
unless you've given consent for your dna to be shared anywhere, with any of the government agencies,the insurance companies, or even with other individuals who have given their dna samples, it shouldn't be shared at all.

That is exactly my point in the post above, by agreeing to the test, you are consenting to your DNA information being shared. You agree that the results belong to them and they are free to do with it as they please. It is in the fine print of all the commercial DNA testing companies. The only exception would be if such testing is ordered by your physician for medical reasons and you used a medical lab and not a commercial company.
 
sstterry said:
Bestoutwest said:
It's not as if they're sharing it with insurance companies.

How do you know that?

:clap: Amen! - three words.... Remember Facebook's Promise?

///////////////
If you think big insurance companies (both medical AND life) are not trying to get in on this dna data deal behind closed doors then I have some ocean front property for sale in Arizona.... :pop:
 
I think DNA testing is the best thing since sliced bread. Violent criminals from the past are living in fear, and hopefully new one's are thinking twice. There's definitely a chance DNA testing is going to hurt a lot of folks, but it should be your DNA.
 
Under the ACA your medical records are supposed to be digital and sharable with other physicians/medical providers per HIPAA regulations. That pretty much leaves them exposed to anyone in the field with access.
 
maybe some of you missed this part..


"The real risk is not exposure of info but that an innocent person could be swept up in a criminal investigation because his or her cousin has taken a DNA test,''

as soon as cops get a target.. whether they are right or wrong.. they will take them down.
 
slick4591 said:
Under the ACA your medical records are supposed to be digital and sharable with other physicians/medical providers per HIPAA regulations. That pretty much leaves them exposed to anyone in the field with access.
The funny thing about HIPPA is that it has no teeth. People in the Medical Field are scared to death of it, but if information gets released, or leaked, the penalty is ¯\_(ツ)_/¯so what. Plus there is no private cause of action, so an individual cant sue under HIPPA even if they broadcast your medical secrets on the 6 o'clock news.
 
"Those who would give up essential Liberty, to purchase a little temporary Safety, deserve neither Liberty nor Safety."

'"The most terrifying words in the English language are: I'm from the government and I'm here to help." '
 
ddd75 said:
maybe some of you missed this part..


"The real risk is not exposure of info but that an innocent person could be swept up in a criminal investigation because his or her cousin has taken a DNA test,''

as soon as cops get a target.. whether they are right or wrong.. they will take them down.

I didn't miss that statement, I tried to overlook it. DNA is more precise than fingering you for something your cousin did.
 
Hook2.0 said:
Bestoutwest said:
Hook2.0 said:
That's an interesting take on it. No privacy concerns at all? :roll:

I've never done anything that required my DNA to verify my guilt or innocence. It's not as if they're sharing it with insurance companies. That's a different take. What concerns do you have? Ie. what are you guilty of?

I guess you don't understand just how much information is in dna. Would you give out your medical history to strangers?

If I'm guilty of anything it's being overly cautious. Same reason I typically don't go into customers houses, especially those where a woman is the only person in the house.

unless you've given consent for your dna to be shared anywhere, with any of the government agencies,the insurance companies, or even with other individuals who have given their dna samples, it shouldn't be shared at all.

It's not a position of fear, it's a position of caution

Insurance company vs FBI is a different argument. Are you saying you're ok with criminals walking the street?
 
sstterry said:
slick4591 said:
Under the ACA your medical records are supposed to be digital and sharable with other physicians/medical providers per HIPAA regulations. That pretty much leaves them exposed to anyone in the field with access.
The funny thing about HIPPA is that it has no teeth. People in the Medical Field are scared to death of it, but if information gets released, or leaked, the penalty is ¯\_(ツ)_/¯so what. Plus there is no private cause of action, so an individual cant sue under HIPPA even if they broadcast your medical secrets on the 6 o'clock news.

I'm not sure that's true. If Joint Commission fines the facility you work at for something you did, that will more than likely be passed to you.
 
Bestoutwest said:
sstterry said:
slick4591 said:
Under the ACA your medical records are supposed to be digital and sharable with other physicians/medical providers per HIPAA regulations. That pretty much leaves them exposed to anyone in the field with access.
The funny thing about HIPPA is that it has no teeth. People in the Medical Field are scared to death of it, but if information gets released, or leaked, the penalty is ¯\_(ツ)_/¯so what. Plus there is no private cause of action, so an individual cant sue under HIPPA even if they broadcast your medical secrets on the 6 o'clock news.
I'm not sure that's true. If Joint Commission fines the facility you work at for something you did, that will more than likely be passed to you.
I have never heard of that happening. I am not saying it does not, but that is the first I have ever heard that a Federal Fine can be passed on to a private citizen unless it is in the whistleblower context.
 
sstterry said:
Bestoutwest said:
sstterry said:
The funny thing about HIPPA is that it has no teeth. People in the Medical Field are scared to death of it, but if information gets released, or leaked, the penalty is ¯\_(ツ)_/¯so what. Plus there is no private cause of action, so an individual cant sue under HIPPA even if they broadcast your medical secrets on the 6 o'clock news.
I'm not sure that's true. If Joint Commission fines the facility you work at for something you did, that will more than likely be passed to you.
I have never heard of that happening. I am not saying it does not, but that is the first I have ever heard that a Federal Fine can be passed on to a private citizen unless it is in the whistleblower context.
Joint Commission is not a federal organization. They're a private group who accredits healthcare facilities. Their scores are important because it affects your reimbursement rate as a healthcare provider.
 

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