Most of us are pretty hesitant to give out our social security numbers. While we have a vague idea what somebody might do with it, it’s something deeply personal, connected to our financial wellbeing. We are worried about our credit and credit history and are even willing to pay companies to monitor our credit histories for anything questionable to deviating from the norm.
When it comes to something far more personal, we don’t seem to be as worried.
Our DNA might contain the most personal information about ourselves that could exist and yet, we seem a lot less hesitant to hand over this information to people and companies we don’t even know that well.
The recent proliferation of genetic ancestry services is a case in point.
Many of us are genuinely curious about our family histories and this seems like a way to learn about a past that would have otherwise been hidden from us. For most of us it’s just a curiosity, something interesting to learn about and therefore don’t really look into company privacy policies or who else might have access to that information. Frankly, why should I even care if somebody else finds out that 23andMe thinks that there is a 3% chance that my paternal family hails from Scotland?
But whether we realize it or not, there’s a ton of information that’s contained in our DNA. We are currently able to screen for certain genetically inherited diseases and even for genes and alleles that out is at risk for various diseases. This information, together with a family history, can help inform us about screening, treatment, or even just knowing how to plan for the future. While obvious to many, it’s important to remember that each and every cell in our body contains a compete set of DNA – so even a simple cheek swab or saliva sample contains every single detail of genetic information there is to know about us.
And while we may not be aware of it, there are actually real risks in sharing our DNA with consumer testing companies. Just last week, very clever detective work was revealed in using DNA samples and comparing them to known publicly available genealogy websites to track down and arrest the ‘Golden State killer.’ What this means for broader questions of genetic privacy are just beginning to be explored.
Jeremy Gruber, former president of the nonprofit Council for Responsible Genetics, whose books include “Genetic Explanations: Sense and Nonsense,” said people who use commercial genetic testing companies to determine ancestry or genealogy are “oftentimes sacrificing their privacy.”“It’s no different than what we’re finding with general internet privacy,” Gruber said, adding that a lot of companies “are using information in a way that was not anticipated a decade ago. The laws have simply not caught up with some of the new uses of personal information.”
There is a lot that our DNA can tell us about ourselves, even more than being the most accurate means of identification. There is even more that we likely don’t even realize that our DNA can tell us. That which we previously, with excessive hubris and pride, described as “junk DNA” is turning out to have a lot more in store than we originally thought. While the unveiling of the Human Genome Project was a watershed moment in scientific discovery, we are slowly learning that it was just the tip of the iceberg.
So when companies and organization offer to “test our DNA” for free – without us paying any copays or deductibles – it means that somebody in the end is footing the bill. Why would they do that if they don’t stand to gain?
23andMe has, for example, suggested that its longer-range goal is to collect a massive biobank of genetic information that can be used and sold for medical research and could also lead to patentable discoveries.
This isn’t necessarily a bad thing. It’s just something that we as consumers should understand very well before we hand over the most personal information that we have. Caveat emptor.