Companies can’t even keep simple data like our passwords and credit card numbers safe, so should we trust them with our most personal data: our DNA? When you mail a tube of your spit to a personal genomics company, that’s exactly what you’re doing, and it turns out that data isn’t as private as you might have thought.
By using the service you also agree that you will let them use your most sensitive information to serve you questionnaires and to develop and improve their own products. They also say that they will share your sensitive information, without any additional consent, if “the information has been anonymized or aggregated so that you cannot reasonably be identified as an individual.” But it’s your DNA. It’s your personal information, unique to you, even if your name isn’t attached.
DNAFit, which sells weight loss and strength training plans, 상태 that they “may disclose to third parties Aggregated Genetic and Self-Reported Information. If we use your information we will take steps to protect your privacy by making this information non-identifiable. To do so, we will take out any details that could identify you with ease, such as name and email address.”
These companies also track other information about you, typically including web browsing habits, your answers to questions about your health, and your mailing address. That plus the most secret contents of the nucleus of your cells doesn’t sound very “non-identifiable” to me.
Your DNA Belongs to Other People Too
You share half your DNA with each of your parents, and likely a quarter with each of your grandparents. Siblings also have half your DNA on average, and everyone on your family tree has some relation to you. That means that if you buy your mom a DNA test to find wines she might like, data giant Helix now has half of 너의 genome on file.
This is a concern for privacy, but it also opens up a huge can of family history worms. Many personal genomics services bill themselves as a way to find distant relatives. But you might also find, as George Doe did, that your dad had another son nobody knew about, and oh look now your parents are divorcing. Doe writes that relative finders are “essentially really advanced paternity tests” and that few people really think about that when they check the box that says they want to find relatives.
Yesterday Senator Chuck Schumer called on the Federal Trade Commission to “take a serious look” at these companies’ privacy policies and come up with some way for consumers to get the privacy they probably assume they already have.
In the meantime, if you don’t want these companies to have unfettered access to your most personal data, your best bet is to 아니 click those great Cyber Monday deals, which are admittedly looking pretty good right now. (23andme’s $199 test is half price if you buy two; Helix is waiving its one-time $80 sequencing fee; Ancestry is running a deal for $49.)
If you do buy one—or if you already have, in the past—you can ask to delete your data. Ancestry and 23andme both let you download your own raw data, so you can keep that while you delete the copy that’s officially on file. There are third-party companies that will analyze that file for you, but then you have to worry about 그들의 privacy policies.