Over the last few years, ancestry kits have become wildly popular. According to MIT, more than 26 million people have taken a DNA test. But, does your desire to learn more about your heritage and family history come at a price? No pun intended.
It’s highly likely.
In 2018, 23andMe received $300 million from a pharma company in exchange for access to data from its DNA kits. How is this possible? Well, according to Dena Mendelsohn, senior policy counsel for Consumer Reports, the HIPAA privacy laws that protect patients in a medical setting don’t apply to companies that do direct-to-consumer genetic testing. So this means that as long as their terms of service don’t specifically prohibit it, companies like 23andMe can conduct research on your genetic data, sell it, or share it with third parties.
So, how do you protect yourself?
Always read the privacy policies companies have listed. Yeah, I know it’s common practice to glance at the first few lines and then scroll to the bottom of the page and click accept. But if you’re giving away something as vital as your DNA, then you need to know exactly what it’s being used for and whether or not it will be shared with third-parties.
Also, even if the company has excellent privacy policies, there’s always a possibility that your data can be exposed through a security breach. So again, think long and hard before you click the accept button.
And if you’ve used:
Here’s how to remove your genetic data:
How to delete your genetic data: Go to the Customer Care page, select “Accounts and Registration,” scroll to the bottom of the bulleted list options and select the last bullet titled “Requesting Account Closure.” Once there, you must submit a request to have your spit sample destroyed and/or have your account closed.
How to delete your genetic data: Sign into your account, click the DNA tab, and select Your DNA Results Summary. Then click on Settings and select Delete Test Results to delete data.
How to delete your genetic data: Go to the Manage DNA Kits section of your account settings and then select the button to delete data. You can also contact the MyHeritage customer support division by phone or email to have your data deleted.