Is Your DNA For Sale?

Category: Privacy

DNA testing kits sold online are popular holiday gifts, and can tell you something about your family history. But could sending in your DNA sample have a negative impact on the privacy of yourself, your family, and your close relatives? Here's what you need to know, especially if you've submitted a DNA sample to Ancestry or 23andMe...

Dangers of DNA Testing

You might not think your relative’s genealogy hobby could bring you an hours-long interrogation by the FBI and a search warrant for your DNA. But that’s what happened to one film maker, and with the growing popularity of online DNA testing services, the odds of it happening to anyone are growing.

It’s no secret that federal, state, and local governments share DNA profiles gathered at crime scenes. The DNA of convicted offenders also goes into the CODIS (Combined DNA Index System). The federal government and 28 States have enacted laws permitting the collection of DNA from people who have merely been arrested or charged with crimes; yes, even the “innocent until proven guilty" persons must give up their DNA.

Some local law enforcement agencies have set up “sobriety checkpoints” where every vehicle is stopped and its occupants are pressured to “voluntarily” provide DNA samples by intimidating, uniformed officers. In Windsor, Ontario, police went door to door “requesting” the DNA of everyone in a neighborhood in search of the murderer of a pregnant woman.

Online DNA search

But law enforcement can’t collect everyone’s DNA; at least, not as fast as it would like. So now, police are turning to private-sector databases of DNA profiles collected for medical, genealogical, and other purposes that have nothing to do with crime.

Ancestry.com, perhaps the largest genealogical research resource available to the public, owns a DNA database purchased from an LDS Church genealogy project years ago. Incredibly, Ancestry.com made this sensitive data public and searchable! For law enforcement, it was the genetic equivalent of dumb criminals’ self-incriminating public Facebook posts. All they had to do was search Ancestry.com’s free database for a match with crime scene DNA, then get a warrant for the Ancestry.com user’s identity.

What is Familial Searching?

“Familial searching” goes a long step further. It’s based on the premise that one’s relatives have DNA similar to yours. So if a direct search doesn’t turn up a match strong enough to serve as probable cause for a warrant, police may look for partial matches that indicate a relative of the unknown DNA sample. Such a familial match may serve to obtain a warrant for the potential relative’s identity. Then the police go looking for that person’s relatives.

Are you interested in learning about your relatives and ancestors, or creating a family tree? Are you looking for good software or websites where you can do genealogy research? See my article Here's How: Genealogy Research Online for some of the best online genealogy tools...

That is exactly what happened to Michael Usry. Years ago, his father donated DNA to that LDS genealogy project, never dreaming it would end up in a commercial, public database searched by the Idaho Falls police. The senior Usry’s DNA profile was an “excellent match” to DNA found at a 1996 murder scene, though still dissimilar enough to rule him out as a suspect. But that was enough for a warrant to obtain Dad’s identity, and the police started going through his family.

What they found is that Michael Usry had “ties” to the Idaho Falls crime scene; two of his sisters attended university 25 miles from it. He’d been on a ski trip near Idaho Falls when he was 19. Oh, and he had Facebook friends in Idaho, too. Also, Michael Usry’s films often feature violence, indicating a “depravity of mind” according to police. This thin soup, and the fuzzy science of familial DNA searching, convinced a judge to issue a search warrant for Michael’s DNA, which was executed by FBI agents in Usry’s current home town of New Orleans. Usry sweated for 33 days before the DNA test results cleared him.

DNA testing is becoming more popular and less expensive. It’s a very useful tool for identifying potential medical problems before they actually arise. But if DNA databases become fishing holes for law enforcement, people may well shy away from getting tested.

Familial searches of DNA yield a high percentage of false positives, generating numerous fruitless leads in a criminal investigation. In the UK, which has employed familial DNA searches for over 10 years, a 2014 study found that just 17 percent of familial DNA searches “resulted in the identification of a relative of the true offender.” The damage done to the reputation of someone who merely falls under suspicion of a crime may outweigh the utility of unreliable familial DNA searching. Had Michael Usry been a schoolteacher, rumors that he was being investigated for a girl’s murder might have ended his career unjustly.

On the flipside, police in California were able to find and arrest the "Golden State Killer" Joseph DeAngelo, 40 years after his string of murders, rapes and burglaries. They used publicly available DNA information from GEDmatch, to identify a distant relative of the suspect. GEDmatch stores DNA information voluntarily uploaded by people who use DNA testing kits provided 23andMe or Ancestry, to search for family members.

Can Anyone Do a DNA Search?

There is no federal law regulating familial DNA searching. Maryland and Washington D.C. explicitly prohibit it, while the practice is regulated by laws in California, Colorado, Virginia, and Texas. Police have free rein in all other States. The Idaho Falls police searched Usry Sr.’s family tree for five generations, even though the FBI says familial searching is useful only for identifying suspects among parents or siblings.

Ancestry.com suspended public access to its DNA database in the wake of the Usry case. However, that does not prevent law enforcement from seeking a search warrant to look through that database for a specific DNA profile, if they can cite probable cause to believe that a useful match is in Ancestry.com’s database. As long as the data exists, it is vulnerable to court orders. Ancestry.com tells users in its terms of service that it will provide their data to law enforcement in response to search warrants or court orders. However, the company is silent on how many warrants, orders, or informal requests it has received, and how many have been fulfilled. They do state that the company "will not share your genetic data with employers, insurance providers or third party marketers without first getting your consent."

23AndMe.com, another DNA testing firm that tests for genetic indicators of medical problems, issues a quarterly transparency report. It shows that the company has received only seven requests from law enforcement agencies for its data, and that no request has been granted in whole or in part.

However, that doesn't mean that DNA testing companies aren't *selling* the data they collect. Both Ancestry and 23andMe do sell (or have sold) your data to drugmakers and other interested parties. In 2018, pharmaceutical giant GlaxoSmithKline paid $300 million for a four-year deal to use 23andMe's genetic data to help them develop new drugs. Ancestry partnered with Google's Calico subsidiary from 2015 to 2018, to study aging and longevity.

The genetic data is anonymized, of course, before sharing. But leaks, mistakes and data breaches can happen. And despite the best efforts to remove personally identifying information from DNA samples, researchers at the Whitehead Institute for Biomedical Research have proved that anonymizing this data is not foolproof. They were able to determine the identities of 50 people who anonymously donated DNA donated for scientific studies.

Have you had your DNA tested? Your thoughts on this topic are welcome. Post your comment or question below...

 
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Most recent comments on "Is Your DNA For Sale?"

Posted by:

GWC
16 Dec 2020

Ancestry is a rip off. I found my research being sold with the typo I made when I first entered it. I no longer belong to ancestry.com and offer my research for free to anyone wanting it.


Posted by:

Renaud Olgiati
16 Dec 2020

Which is why it would be recommended to have to DNA testing done in a place with good data protection laws and limited links to law and order where you live.

For instance, if you live in the US, have your test done in an European country (and avoid the UK as the plague, as it will be out of the EU in a short time, and has also been known to illegally share its data with US agencies.)


Posted by:

sh
16 Dec 2020

Also, if the company who has your information is ever sold or otherwise acquired by another company or even COUNTRY (such as China) then they have your info as well. China is using the DNA info right now to possibly create targeted bio weapons. I would be interested in seeing GWC's research results.


Posted by:

Tido
16 Dec 2020

I use both Ancestry AND another, much more extensive DNA company and that particular one is VERY secure. Without a username and number nothing can be seen there. The only way to see another's DNA info is if you're determined to be a direct match, and then it only gives an email address (no names or any other info - just the matching numbers). I've subscribed to BOTH of those services for MANY years without any kind of problem.


Posted by:

cal67
16 Dec 2020

@Tido, the proviso is "that you are aware of". Every company I have ever logged in to has changed their terms of service, and the one constant is that virtually nobody reads them. The line about not selling to third party marketers is the one that worries me as much as law enforcement doing fishing expeditions. At some point, most of these companies will make some sort of change to how they protect you for "economic" reasons - greed. If they can make money off it, eventually they will try to.


Posted by:

cairyn silvers
16 Dec 2020

For years law enforcement has wanted a DNA database. I really believe that this covid 19 is a way to get a tremendous amount of DNA without anyone knowing what is being done.


Posted by:

john
16 Dec 2020

If we could upvote comments, I would do so for @cairyn silvers


Posted by:

Jim
16 Dec 2020

So, did I sign away ALL my rights forever, when I signed up with Ancestry, 23andMe or whichever...forever?


Posted by:

Bart
16 Dec 2020

What does Covid have to do with a genetic database any more than getting a flu shot? Couldn't you say that any time you give blood, your DNA is available to the lab and anyone they want to share it with? Let's not go all Q-anon here.


Posted by:

jim
16 Dec 2020

I agree with GWC. My son sent off to Ancestry.com for their family search DNA test. TWICE they reported back that he had 'no DNA present'.I did his swab the second time and I'm a retired RN and know how to do the swab. I guess 'the Church' has to make money some way.


Posted by:

John Hathorn
16 Dec 2020

The advancements in genetic engineering and people with "unpopular" character traits dearly want to be absolved of any responsibility for their life style. Thus, some researchers try to isolate genes that precondition a person to adopt that life style thus the person would be "blameless." For instance, serial rapists would love to have genetic engineers isolate that explains their malady. If your DNA is in a databank and happens to have a "naughty gene sequence," you or your heirs might EVENTUALLY be considered "an interested party." The future in genetics is wide open and, just like a Chinese doctor used CRISPR to engineer twins DNA, there always will be someone who will step ahead of medical ethics to "advance their science."


Posted by:

DaneMK
17 Dec 2020

One possible positive case of using DNA samples - to see which people, based on DNA are most affected by the Corona-virus, so they should take more care. Because some people are almost unaffected by this virus, while for some it is deadly


Posted by:

RandiO
17 Dec 2020

More and more, it seems that the word "secure" is nothing but a milestone in the past and the word "privacy" is but a placebo for the future.


Posted by:

Steve
17 Dec 2020

I believe the law enforcement getting DNA has drastically reduced the testers sharing to GedMatch. I haven't had a new match there for months.


Posted by:

Beau
17 Dec 2020

Interestingly, The Hallmark Movie that I just watched featured a girl who was adopted, researching her DNA, through a service. The movie featured adds by Ancestry.Com. I imagine that they paid well to sponsor that movie.


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