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DNA kits: privacy, accuracy, and other things to consider before swabbing

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EAST PROVIDENCE, R.I. (WPRI) — Companies like 23andMe and Ancestry promise to reveal a person’s ethnicity, flag health concerns, and even connect relatives. 

For long-lost sisters Melodie Seidel and Lisa Dunn, a DNA test filled in some blanks.

“It was amazing,” Dunn said. “After 56 years, I found my sister! I love her. I’m so happy!

For others, like Nancy Ryan, DNA tests have created new holes. 

“It’s like somebody took a big bite out of your life,” Ryan said. “I was lost a little bit.”

Ryan is a producer at our sister station in Tampa, Florida. When she took a DNA test, the results broke her heart. 

“I first thought there had to be a mistake,” Ryan recalled. “The man who raised me wasn’t really my father. It was devastating. It was a tremendous loss. It was like he had died again.”

Dan Eggleston experienced a similar sense of loss when his DNA test results showed his grandfather wasn’t his dad’s biological father. 

“It was pretty devastating because I had done a lot of research on that line,” Eggleston said. 

How accurate are DNA tests? 

Even just determining a person’s roots isn’t always totally clear. 

Rachel Schwartz, an assistant professor in the School of Biological Sciences at the University of Rhode Island said one of her own students was confused by DNA test results. 

“She’s from Ukraine, and she got her test results back and they say, ‘You’re partly Russian and partly Lithuanian,'” Schwartz said. “She goes, ‘Oh my God. My family tree is totally wrong.’ That’s not really true.”

“The DNA test itself is only as informative as the data that you have,” Schwartz explained. “You’ve got to have samples of all the populations that you’re from, and then if you get a result, that result just may be the best, highest probability as far as which population you’re from.” 

“If you are a little bit of this and a little bit of that and you don’t have really good samples of all of those populations, the computer is going to assign you to something,” she added.  

Here are statements from some of the popular tests about their accuracy:

AncestryDNA can estimate your origins to more than 350 regions around the world—5x more detail than other DNA tests.*
*5x more regions than MyHeritage, Nat Geo Geno 2.0, and Family Tree DNA. 2x more regions than 23andMe.

23andMe is the first and only genetic service available directly to you that includes reports that meet FDA standards for clinical and scientific 
validity.
Our rigorous quality standards:
•    Genetic Health Risk* and Carrier Status* reports meet FDA criteria for being scientifically and clinically valid
•    All saliva samples are processed in CLIA-certified and CAP-accredited labs
•    Our DNA collection kit is FDA-cleared for use with our Genetic Health Risk and Carrier Status reports manufactured in accordance with FDA’s Good Manufacturing Practice regulations
•    Genotyping is a well-established and reliable platform for analyzing DNA
•    Our team of scientists and medical experts use a rigorous process to develop and design each report, ensuring validity and ease of use
•    Ancestry percentages are derived from our powerful, well-tested system that provides you with ancestry estimates down to the 0.1%

Privacy Questions

The Golden State Killer terrorized California in the 1970s and ’80s, committing dozens of rapes and murders. 

The crimes abruptly stopped and the case went cold until just a couple of weeks ago when law enforcement matched the alleged killer’s DNA to a distant relative’s DNA on the free genealogy website, GEDmatch. 

Police say another DNA test confirmed Joseph James DeAngelo, a 72-year-old ex-police officer, was the killer who had eluded them for so many years. 

It was a major win for law enforcement, but the case also raised new questions about DNA tests and privacy. 

In a statement, GEDmatch said,  “Although we were not approached by law enforcement or anyone else about this case or about the DNA, it has always been GEDmatch’s policy to inform users that the database could be used for other uses.”

The Federal Trade Commission (FTC) is cautioning consumers who are considering DNA testing to consider the privacy issues and comparison shop. 

Questions to ask: 

  • How will my health and genetic information be used and shared?
  • Will my profile be available to others online?
  • Are other users able to send me personal messages?

The privacy policies for most DNA tests are paragraphs long, so it is important to read through all of the fine print. 

Ancestry says the company “Is committed to being a good steward of your personal information, handling it in a responsible manner, and securing it with administrative, technical, and physical safeguards.”

23andMe says, “We are committed to providing a secure and safe environment for our services.”

According to the FTC, it’s also important to realize hacks happen. Even if companies promise to protect consumers’ sensitive information, there is a potential that it could fall into a hacker’s hands. 

Susan Campbell (scampbell@wpri.com) is the Call 12 for Action and Target 12 consumer investigator for WPRI 12 and Fox Providence. Follow her on Twitter and on Facebook.

Copyright 2019 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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