After I sent my DNA sample to 23andMe and got back my genetic data, I uploaded the whole thing to opensnp.org, a public collection of genotypes. I did this because scientists like myself can use this collection to make discoveries about human genetics. As a bonus, I’ll never have to worry about keeping my genetic data private—that’s no longer an option.
I do respect the desire for privacy, and take measures to protect mine. I just don’t think genetic data is especially sensitive. People worry too much about exposing it, to their own detriment.
The typical article that fuels this paranoia will start by noting that genetic data was used to catch a serial killer. It will then warn that your own data could be sold and then “find its way elsewhere”. It will end with instructions on how to delete your genetic data that you foolishly paid for. Somehow I’m not persuaded.
These warnings are too far from suggesting actual harm to be scary. They don’t explain or even insinuate. Instead, they are a pretext for the true source of the fear, which is the misunderstood relationship we have with our own DNA.
Many people consider their DNA to be the core of their self—as personal as data can get. But it actually says very little about you as a person (beyond the fact that you are a person).
Consider that your genome has existed, unchanged, since you were a single-celled embryo: before you were born, before you had a brain, before anything happened in your life. How much can it possibly reflect you as an individual?
Your DNA dictates some visible traits (which are public anyway), but otherwise doesn’t say much about your life, your relationships, or your intentions. It does, however, indicate whether you have an especially high or low risk of some health issues, and can help guide treatment of an increasing number of diseases. While useful to you and your doctor, in the wrong hands this information is much less harmful than, say, your medical records.
People argue that their genetic data could be abused by health insurance companies. But those companies aren’t lawless—they are allowed to use some individual factors to set rates and not others. That’s why we don’t have to conceal our gender to avoid our insurance companies finding it out. Since people trust these rules, let’s decide how use of genetic information should be regulated too.
And yes, your DNA can be used to identify you, but so can your face. How many people refuse to have any photos of themselves online out of fear that they could be identified in public?
It’s true that your genetic data also reveals some of your relatives’ own genetic information, a concern that is unique to this type of data—or is it? When you share a photo on social media of you and others, you give away everyone’s appearance, location, and lifestyle as much as your own, and yet people are mostly fine with this. We understand that our lives are interconnected whether we like it or not. The same applies to DNA.
I’ve glossed over some scenarios where genetic data can be abused, and I don’t fault people for wanting to keep their data secret. But please, don’t keep yourself in the dark about your own health because of an unexamined fear of data falling into the wrong hands.