DNA & privacy

SOUTH BEND, Ind. -- More and more people are taking home DNA tests these days and uploading the results to websites looking for relatives. But there are some very serious concerns about how that data is stored and who will have access to it in the long run.

DNA test kits are now on the shelves at nearly every drug store, becoming so affordable and so popular in the past few years scientists at the Massachusetts Institute of Technology estimate 26 million Americans have swabbed their cheek or spit in a tube to find out more about their family tree.

“I think it’s great! The more people that get tested the bigger the databases are and the more likely it is we can find the person we’re looking for,” says Alice Clark the president of the South Bend Area Genealogical Society who used DNA to trace her relatives back multiple generations to Germany when old fashioned research on paper hit a dead end.

“It’s a wonderful tool,” she said.

But some experts worry about privacy and data security issues.

“What happens to this massive database that they have of genetic information,” asks Notre Dame University Law Professor Mark McKenna.

The privacy expert understands the lure of finding out more about your family background, your genetic markers for disease and searching for long lost relatives, but also warns of a downside to the high tech tool people may not be aware of.

“Do we want the government to have some giant big brother database out there. Do you know this is being used in a sort of mega database by law enforcement to solve things?”

And he’s right. Last May the notorious Golden State Killer suspect Joseph James D’Angelo was finally caught. He’s now charged with multiple murders and dozens of rapes from as far back as the 1970s.

It was the first high-profile cold case cracked because so many people are taking DNA tests, in this case D’Angelo’s distant relative, and uploading their genetic profiles to a private database called GED Match that anyone can search, including law enforcement.

“What is this company doing with that information?”

McKenna worries another company could take over GED Match and possibly use or sell your private information to help employers and insurance companies decide whether you should get health or life insurance, even qualify for a job based on your genetic predisposition to certain diseases.

But right now its use as a crime fighting tool is exploding across the country and here at home.

8-year-old April Tinsley was found raped and murdered in Fort Wayne back in 1988.

The killer leaving haunting notes for years threatening to kill again, taunting investigators.

In December, 40 years later, John D. Miller pleaded guilty in case. He was busted only because one of his relatives also uploaded DNA test results to GED Match—and it matched DNA evidence found on April’s body.

That same technology is now being used to try and identify a Jane Doe found dead in a farmer’s fields in Angola, Indiana in 1999.

“At the time she was found she was pretty much skeletonized,” Detective Sergeant Chris Emerick said.

The investigator from the Steuben County Sheriff’s office showed us photos of some the scant evidence they have—a cheap watch the woman was wearing, some jewelry and a tattoo.

“Without this technology I don’t know that we’ll ever be able to identify her.”

But now 30 years after the body was found, nude with a bra around her neck, Detective Emerick has renewed hope DNA and GED Match can help find her relatives and eventually her identity.

"They can give us an idea of how she ended up here; is she originally from somewhere close by, is she a transient, is she somebody that traveled around all the time and does she have any connections up this way with another relative or a boyfriend?”

The FBI used an anthropologist to create this sketch of what the woman could have looked like in 1999 but Detective Emerick says they may use new Snapshot Technology from a Virginia company called Parabon Nanolabs to spin up another image based solely on her DNA profile.

The same technology used to create an image of a potential African American suspect that outraged civil rights activists when police in Orlando, Florida used Parabon to create a composite sketch of an unknown man.

“Just because they have the composite or a snapshot of what they think the person looks like doesn’t mean that’s exactly what they’re going to look like,” warns Emerick.

And if you worry about keeping your personal genetic profile private, read the fine print on the GED Match website. It warns, “the confidentiality of any communication, material, or personal information provided to GED Match via the site or email cannot be guaranteed.”

But even Alice Clark knows most people don’t read those terms of use agreements and privacy warnings.

“You need to at least glance at it and if you don’t then you have no recourse.”

And, of course, that could put your data at risk while searching your family history.

“It’s kind of a double edged sword," Clark said. “ You want to keep your information private but if you keep it private you’re never going to find a match, so I think you just have to be careful about where you post your information.”

The biggest players in the DNA registry business are "Ancestry.com" and "23 and Me" but there are many others and they each specialize in different areas like genealogy or genetic health risk factors.

If you are ready to take the plunge, experts say do your research, read the fine print and be ready for possible surprises that could change your family forever.