One of this year’s hottest holiday gifts has privacy advocates worried.
In Tucson and elsewhere, sales of home DNA testing kits are soaring, spurred by discount pricing and ubiquitous TV ads that promise users insights into their family heritage.
But the saliva tests can also reveal propensities for diseases, and critics fear users may be putting their medical privacy at risk by providing genetic information to companies that can’t guarantee it will remain anonymous.
“It worries me that something as sensitive as a genetic test is being marketed as a stocking stuffer. This is not a parlor game,” says Peter Pitts, a former associate commissioner for the U.S. Food and Drug Administration, now president of the New York City-based Center for Medicine in the Public Interest.
“These companies say ‘Don’t worry, your data is anonymized.’ They can promise that, and do their best, but that doesn’t make it so,” he adds.
Pitts points to studies done at Harvard and the Massachusetts Institute of Technology which showed that even when DNA data was stripped of personal identifiers, researchers often were able to trace it back to named donors by cross-referencing it with voter registration lists and other information available online.
U.S. Sen. Chuck Schumer recently called on the Federal Trade Commission to investigate the privacy policies of companies that sell the home tests to ensure they are “clear, transparent and fair to consumers.”
“There are good things that can come from this kind of at-home testing that relate to genetic research,” the New York Democrat said in a news release, but “it is clear more must be done to protect consumer privacy.
“There is no point to learning about your family tree if your privacy gets chopped down in the process.”
Locally, the Pima County Genealogy Society is among those promoting the tests. Some of the group’s 160 or so members have already taken one, including its president Amy Urman, who has also purchased the test kits for several members of her family.
Urman, a private investigator who’s been researching her roots since the 1980s, says she isn’t worried about the security of her family’s genetic information, which now sits in databases with that of millions of others worldwide who have taken home tests.
The top home DNA testing firms have a huge financial incentive to stay on top of data security, she says, because “if they mess up they will lose much of their business.”
Spokesmen for two of the top firms said they take great pains to safeguard customer privacy and do not share DNA data with outside researchers without customer consent.
“We have industry standard security measures that secure our customers’ sensitive genetic information and privacy,” said Eric Heath, chief privacy officer at AncestryDNA, which recently announced record-breaking holiday sales of its test kits.
Scott Hadley of 23andMe said the company has a comprehensive security program that, among other things, includes data segmentation, multi-layer encryption and strict limits on who can access test results.
Privacy experts say anyone considering a home DNA test should first read the fine print — something Maribel Alvarez wishes she had done before taking an AncestryDNA test 18 months ago.
Alvarez, executive program director of the Southwest Folklife Alliance and an organizer of the popular Tucson Meet Yourself festival, said she took the test on a whim at a time when privacy concerns were not as widely publicized as they are now.
The results she received seemed “very silly, very commercialized” — a list of names of 18 potential distant relatives and a percentage breakdown that said her forebears were Iberian, Native American, West African and Irish.
“I didn’t read the fine print. I probably should have,” she says. “I thought it would be entertaining, like reading a horoscope.
“When I saw the results it almost made me wish I didn’t take the test.”
