Drug Giants are buying your DNA Data. Here’s how to delete it.
Popular spit-in-a-tube genetics-testing companies like Ancestry and 23andMe can sell your data to drugmakers. What is concerning to some is that recently, the pharmaceutical giant GlaxoSmithKline announced it was acquiring a $300 million stake in 23andMe.
With a four-year collaboration deal, Glaxo and Silicon Valley’s 23andMe said Wednesday they will tap genetic data to find new drug targets and better select patients for clinical studies. Hal Barron, a former executive at the biotech firm Genentech, is leading a new strategy that will focus on the immune system, genetics and investment in advanced technologies.
While this may be exciting for some, it is definitely scary for others. If you are one of those people concerned with the safety of your personal data, you do have the ability, with some effort, to delete your data and request to destroy the sample that you provided.
Depending on the company that you used, deleting your genetic data from these companies can be a surprisingly tricky process. Here’s how to navigate removing your spit sample and DNA data from 6 of the most popular DNA companies including 23andMe, Ancestry, and Helix.
23andMe is likely the most popular commercial genetic testing service. It extracts your DNA from your spit — that’s how you get the information about your health or ancestry.
After registering your spit sample kit online you will be asked whether you’d like your saliva to be stored or discarded. Unlike your spit sample, you are not asked the same question about your raw genetic data, the DNA extracted from your spit.
You can submit a request that the company discard your spit or close your account. To find instructions to do so, go to its customer-care page, navigate to “accounts and registration,” scroll to the bottom of the bulleted list of options under “account creation and access,” and select the last one, “requesting account closure.”
If you want to delete your DNA test results with Ancestry, use the navigation bar at the top of the homepage to select “DNA.” On the page with your name at the top, scroll to the upper right corner, select “settings,” then go to “delete test results” on the column on the right side.
The company’s latest privacy statement says that doing this will result in Ancestry deleting the following within 30 days: “all genetic information, including any derivative genetic information (ethnicity estimates, genetic relative matches, etc.) from our production, development, analytics, and research systems.”
However, the privacy statement also says that if you opted into Ancestry’s “informed consent to research” when you signed up, the company cannot wipe your genetic information from any “active or completed research projects.” But it will prevent your DNA from being used for new research.
To request that your sample is destroyed, you must call member services.
The company also stores your saliva sample. You can request your spit be destroyed by contacting Helix’s customer-care division. There, you’ll find a request form that looks similar to 23andMe’s.
Family Tree DNA
Yes, it is your DNA. You can ask to remove your data and/or to delete your kit. You may do so by using our customer support contact form and choosing the Billing / Change Order category.
If you do want your results permanently removed from their database, they will need a confirmation from you that you understand this cannot be undone. They will also need to know if you would like your cheek swab sample destroyed or left in our storage and if you would like to have your kit deleted.
They will retain personal information related to your account, gender and genetic data for so long as you retain or have management rights/privileges in respect of data held in an account with them, and for 6 months after that time. You can ask us to delete your genetic data at any time using the contact us form.
They will retain your DNA sample for 10 years after you provide it to us unless you close your account or ask us to destroy it sooner.
You can ask us to destroy your sample, and can still maintain an account and receive updates to your results if you have chosen that service.
You can, at any time, delete your DNA Results and DNA Reports from the My Heritage website by using the delete function from the “Manage DNA kits” page on the Website, or request MyHeritage Customer Support to do this for you.
They will, if requested by you, destroy the DNA sample provided by you or your DNA sample which was provided to us by another person with your permission, at any time. To request destruction of your DNA sample, you can contact their Data Protection Officer via email at email@example.com
Are you concerned about your DNA being used to create drugs? How could that sensitive data be compromising in the wrong hands? Share your reasons in comments below.
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