Genetic Testing Kits: 5 Things To Know About Security, Accuracy

ACROSS AMERICA — At-home DNA testing kits used to track family lineage have become increasingly popular in recent years, with millions of Americans submitting their biological information to private companies in hopes of learning more about their family tree.

Sometimes, they’re driven by urgency and the need to learn more about their family medical history.

For others, it is a matter of pure curiosity.

Putting together a family tree is easier with the development of ancestry kits like AncestryDNA and 23AndMe.

But are these tests valuable enough to offset the privacy risks they pose?

Bill Evanina, former director of the National Counterintelligence and Security Center, issued a genetic security warning for Americans while appearing on a recent episode of “60 Minutes” on CBS.

“Sometimes Americans or people around the globe don’t even know the value of their DNA, (or) that it even has value,” Evanina said. “But it’s your single, sole identifier of everything about you as a human being.”

Here are five things to keep in mind about at-home DNA testing kits before you order one:

1. They Aren’t 100 Percent Accurate. How Accurate Are They? The tests performed by ancestry DNA companies are generally good when it comes to close family members such as siblings or parents, but they cannot always tell you where deeper family roots extend, according to a Scientific American report. The tests show where on Earth your DNA is found today, so people might infer — perhaps mistakenly — that’s where their ancestors came from. Experts have consistently said that if attempting to address health problems, people should see a doctor instead of assuming a genetic test is accurate.

2. Are Privacy Concerns Valid? Evanina said the U.S. health information privacy law gives people protection based on health care providers, but not third-party aggregators such as genetics providers. There’s a global race to build the largest genetic database, Edward You, an FBI official, told CBS News. Certain ancestry companies have created their own databases and have differed on how customers can opt out.

People don’t often realize the value their DNA has when it enters the system.

“The return on investment is aggregating the data and what they can do with it once they have enough of it,” You told CBS.

“The value is in the data. It's not just the genealogy companies. Everybody is looking at what kind of data do I have access to, how much do I have, and then how can I turn around and, and monetize it.”

3. How Companies Protect Your Privacy: 23AndMe CEO Anne Wojcicki told CBS News the company never defaults customers into the database they use for medical research, but about 80 percent of its clients have opted in themselves.

"If you talk to anyone who is sick, especially anyone with a terminal illness, and you ask them what they want, what they're looking for is a treatment or something that's going to benefit their children," she said of her company’s partnership with a pharmaceutical company to develop medicines based on human genetic information.

"And we learned the most important thing that 23andMe could do would be to put our own money into developing ways our customers are going to benefit from the human genome."

AncestryDNA allows its users to not be listed as a DNA match, but then no one who is a match would be able to see that you are one or view your ethnicity results, according to the company’s privacy statement.

“We have measures in place to protect against inappropriate access, loss, misuse, or alteration of personal information (including genetic information) under our control,” the company said on its website.

4. These Tests Have Been Used To Solve Crimes: In California, the “Golden State Killer” was captured through DNA testing using the at-home kit GEDmatch.

Joseph James DeAngelo, convicted of several murders and rapes in the 1970s and 1980s, was identified by federal investigators in 2016 after they uploaded DNA from a crime scene to GEDmatch, and matched it partially to his great-great-great grandparents, according to Pew Research. Investigators then built family trees to trace the crimes to DeAngelo, who was arrested more than 30 years after the end of the crime spree.

“I believe, 100 percent, that DNA is the greatest tool ever given to law enforcement to find the truth, whatever that is,” said Anne Marie Schubert, district attorney of Sacramento County, California, where DeAngelo was arrested.

GEDmatch was used to solve dozens of other violent crimes across the country, and now allows users the option to be included in their database for law enforcement.

5. Prepare For Surprises: Sara Riordan, president-elect of the National Society of Genetic Counselors, told CNN this month the tests can reveal information that “you are not necessarily prepared for,” such as finding out someone you know is actually your relative.

“It’s important to consider what you could learn and the potential ramifications of this information before ordering,” she said.