The Popularity of DNA Testing, and How Your Information is Stored – NBC 5 Dallas-Fort Worth

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DNA testing has become an increasingly popular way to learn more about your past and even your future health. But where your most personal data can end up is at times murky.

Tina Kimbell, like thousands (or tens of thousands) of Americans, signed up to have her DNA tested.

Like so many others, she realized… well, she’s not German.

“About 80-percent of my DNA came from… I’m Anglo Saxon European,” said Kimbell.

But to unlock who she is, Kimbell also created a blueprint, a map of data that did not previously exist and could not be more personal. A compilation of numbers that suddenly became tangible, able to predict physical traits, disease and perhaps one day lifespan. All of it now living in a server she doesn’t own.

“You can change your credit card number, you can’t change your information at that level,” said Michael Moore, cyber security expert.

He said health information is increasingly the target of dark web hackers.

“Imagine what you can do if you can call a hospital and you have somebody’s health information, you got their cancer diagnosis before their doctor even has that cancer diagnosis… it’s actually very scary to me,” said Moore.

And it’s not only identity thieves that are interested in personal health data.

Law enforcement is using DNA databases to solve cases, most notably catching a California serial killer after a DNA match was found in a genealogy website.

And it should come as no surprise that drug companies are paying attention too.

Test company ’23andme’ has a sharing deal with pharmaceutical giant GlaxoSmithKline.

With fellow DNA company ‘Ancestry.com’ also working with a Google spin-off to study human longevity.

Both ’23andme’ and ‘Ancestry’ do allow users to delete their information.

In a statement ’23andme’ said in part:

“We do not sell individual customer information nor do we include any customer data in our research program without an individual’s voluntary and informed consent.”

With ‘Ancestry’ telling NBC 5:

“Our customers always maintain ownership and full control over their data. We do not share data with insurance carriers, employers, or third-party marketers.”

“For them to have my DNA, this is kind of funny, but I kind of want to do ’23andme’ to find out my traits,” said Kimbell.

Kimbell said the unknowns far outweighed by the possibilities.

“I think for both of our families everyone processed it differently,” said Kimbell.

Possibilities that turned out to be a sister, that up until their DNA match, she never knew she had.

“Everybody in my family knew I was adopted. I never expected this, I never expected to find anybody,” said Kimbell’s sister.

“It was just overwhelmingly shocking to know that my mom had to do that, give up a child and live without sharing that information,” said Kimbell.

The power of DNA to shine a light on our stories is undeniable.

But how exactly knowing and sharing that story could shape our future, remains one of the important questions of our time.