Concerned about your privacy while using a DNA test from Ancestry DNA, 23andMe, or other DNA testing company? You should be. Use this guide to stay private while using at-home DNA test kits.
This holiday season, at-home DNA test kits were once again one of the most popular gifts. If you’ve received one, have already taken one, or know a family member who took one, you may be wondering what the test might mean for your privacy.
Using an at-home DNA test means sending your most personal identifier away to a for-profit company, and isn’t something to be taken lightly. As Peter Pitts, president of the Center for Medicine in the Public Interest Forensic Genetics Policy Initiative, explains, “The DNA kits are being viewed as stocking stuffers or cocktail party conversation. People don’t think about the security of their DNA as they don’t realize its value.”
When you send your saliva sample to a company to be tested, you are giving them your most personal information: your entire genome, your browsing activity on their website, the information you provide when making an account (like your name and email), your sex/gender, date of birth, credit card number, answers to any health or behavior-related surveys on their site (which can include disease conditions, ethnicity, and other health info), and more.
In addition to providing you with the service you expect, i.e. information about your ancestry and genetic health, they share your personal information with third parties, just like any other online service.
And I don’t just mean the information they have to share with the lab to provide their service. Companies also sell their data to research partners, marketers, and others. For example, Ancestry DNA’s Terms and Conditions state that by sending them your DNA, “you grant Ancestry and the Ancestry Group Companies a royalty-free, worldwide, sublicensable, transferable license to host, transfer, process, analyze, distribute and communicate your genetic information for the purposes of providing products and services.”
This is pretty scary: it shows that the firms are monetizing your DNA, and it’s so vague that you don’t really know to whom or for what reason your data is sold or used.
This is the exact reason why Senator Chuck Schumer has called for a Federal Trade Commission investigation of DNA test companies.
One of the most obvious examples of these companies sharing data is with research partners: Between 2006 and 2016, 23andMe sold its database to at least 13 different drug companies, most recently making a four-year deal with pharmaceutical giant GlaxoSmithKline, allowing them to exclusively mine 23andMe’s customer data to develop drugs.
Every time your information changes hands, it becomes less safe. And, just like any other company, DNA testing companies are susceptible to data breaches. Even if it is not sold by the DNA company itself, it could end up in the hands of data brokers (especially if you’ve used Ancestry, which owns it own DNA broker site, Archives.com.) This can leave you open to:
We took the time to rate the differences in privacy of the five biggest DNA testing companies: Ancestry DNA, 23andMe, MyHeritage, Helix, and Family Tree DNA. Compare privacy scores of these companies here.
Here, you can compare the number of trackers used by each site:
This step is especially important if you have used Ancestry DNA. Since part of Ancestry’s service is learning about your heritage through public records, there is a great deal of personal information about you and your family that can be found on their site. In fact, Ancestry owns its own data broker, Archives.com. Read more about Ancestry’s use of personal information here.
As of October 2018, 60% of Americans of Northern European descent can be identified through the companies’ databases, whether or not they’ve joined one themselves. Within two or three years, this will become 90%. The same study also showed how genetic profiles that DNA companies supposedly “anonymized” could be positively identified. This means that even if you haven’t personally taken a DNA test, it is likely that you are still able to be identified through a DNA company’s database.
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