Surprise! Suzy received an at-home DNA ancestry testing kit for Christmas and 4 weeks later finds out that she is 13% Ashkenazi Jew. Now she is wondering where that came from and if this DNA ancestry kit that cost $99 could even be accurate. And perhaps even more unknown, what will this company do with her genetic information?
Even with the rising popularity of companies like 23andMe and AncestryDNA offering to break down your ancestry into literal percentages, connect you with lost relatives, and reveal your risk for certain diseases such as cystic fibrosis and cancer, much about what goes in these labs is not known to the public. The process is simple enough. Receive and register your kit. Spit into the tube or swab your cheek. Mail your DNA. Log in about 3-8 weeks later to view your results. But what happens to the DNA you gave these places?
Recently, the Federal Trade Commission (FTC) has launched an investigation into these types of for-profit companies in regards to privacy and how they share their gathered genetic databases to 3rd parties . This investigation seems to be prompted by a press release from Senator Charles E. Schumer expressing concern over how “many [consumers] don’t realize that their sensitive information may end up in the hands of many other third party companies” . The letter states he doesn’t want to “impede” any important genetic research, but that the main issue is in not wanting to empower “those looking to make a fast buck or an unfair judgment off your genetic information” .
These valid concerns stem from the fact that every testing company has different privacy policies and consumers often do not read the fine print or fully understand what it means. Though companies like 23andMe have gone to lengths to protect data, generally stating that personal information is encrypted and not directly tied to people’s genetic samples and results , these for-profit companies are still selling their huge genetic databases, up to 4 million people currently, to 3rd party companies for research, such as pharmaceutical companies. In addition, even anonymous information sold in these large databases can be de-anonymized, “people have been able to take genetic information with no name on it and, through other databases, find the name associated with that genetic material”, a TuftsNow article states .
In addition, the 23andMe site states that although they try to prevent “unauthorized” law enforcement access of customer information, “information may be subject to disclosure pursuant to a judicial or other government subpoena, warrant or order, or in coordination with regulatory authorities” . This condition is especially relevant now due to the recent arrest of the Golden State Killer, who was identified as a suspect by matching DNA evidence through data from GEDMatch, a small genealogy website where users can upload genealogical and genetic information .
Even though it seems fun, next time, you might want to think carefully before gifting one of these “cool” $99 kits to your niece at Christmas.
 Baram, Marcus. “The FTC Is Investigating DNA Firms like 23andMe and Ancestry over Privacy.” Fast Company, Fast Company, 6 June 2018, http://www.fastcompany.com/40580364/the-ftc-is-investigating-dna-firms-like-23andme-and-ancestry-over-privacy.
 “SCHUMER REVEALS: POPULAR AT HOME DNA TEST KITS ARE PUTTING CONSUMER PRIVACY AT GREAT RISK, AS DNA FIRMS COULD SELL YOUR MOST PERSONAL INFO & GENETIC DATA TO ALL-COMERS; SENATOR PUSHES FEDS TO INVESTIGATE & ENSURE FAIR PRIVACY STANDARDS FOR ALL DNA ?KITS | U.S. Senator Chuck Schumer of New York.” Press Release | Press Releases | Newsroom | U.S. Senator Chuck Schumer of New York, 26 Nov. 2017, http://www.schumer.senate.gov/newsroom/press-releases/schumer-reveals-popular-at-home-dna-test-kits-are-putting-consumer-privacy-at-great-risk-as-dna-firms-could-sell-your-most-personal-info-and-genetic-data-to-all-comers-senator-pushes-feds-to-investigate_ensure-fair-privacy-standards-for-all-dna-kits.
 23andMe. “Privacy and Data Protection.” 23andMe, http://www.23andme.com/privacy/.
 Rajewski, Genevieve. “Pulling Back the Curtain on DNA Ancestry Tests.” Tufts Now, 30 Apr. 2018, now.tufts.edu/articles/pulling-back-curtain-dna-ancestry-tests.