Consumer at-home genetics testing through companies like AncestryDNA and 23andMe is a booming business. The market was valued at $70 million in 2015, and is expected to increase to $340 million by 2022, thanks to curious people who want to know where their ancestors came from and any genetic health challenges they should be aware of. The problem? Your DNA might not be as safe as you think when you send it off to be tested.
In light of the Sony Studios and Equifax hacking scandals, we all know the consequences and potential dangers of our information being hacked. Some privacy concerns are out of our control, but what about the times when we give access to our data away without knowing it?
You might think your genetics information is private and only accessed with your consent, but in reality, DNA testing companies have far more access to sensitive information. These companies have broad powers as to how they can use your data once you have sent your DNA sample to be tested, despite the agreements you sign showing that they don’t actually own your data.
Gizmodo wrote a revealing feature about the potential pitfalls of signing up with a DNA testing company, and how easily our DNA can be exploited. Your genes contain revealing information about your health, relationships, personality, and family history that, like a social security number, could be easily abused.
While companies can’t claim ownership of your DNA, they can claim ownership of the sample you send, the testing they conduct on it, and the resulting information they collect. In other words, they own the rights to the process. So if they want to use your DNA sample to test something – say for research purposes twenty years from now – the language in the agreement customers sign says they can do so if they choose.
It’s also unclear who else access to your DNA once you send it in for testing. Genetics testing companies have third-party contracts with various testing partners – including pharmaceutical companies, labs and other organizations that can have access to your data. So your sample could be used for purposes that you aren’t aware of, by companies outside of the contract you signed with Ancestry or 23andMe, and the genetics companies can disclaim responsibility for it.
As Gizmodo states: “What’s not clear is who all of those third parties are and what kinds of rules the companies put in place to prevent those third parties from abusing the access to genetic information.”
The article also points out that these companies can make money off of your DNA, but you won’t see any residuals. For instance, if your genes provide the key to finding a cure for Lupus, you won’t realize any monetary benefit.
“Something as important as your genetic markers shouldn’t be thrown around lightly,” Petter Pitts, the president of the Center for Medicine in the Public Interest and a Former FDA Associate Commissioner told Gizmodo. “With all the best intentions, checking a box does not mean that your info is accurate or safe or protected.”