Breach of Trust at 23andMe

Broken DNA Symbolizes Broken Trust by 23andMe

Recently, 23andMe has changed their TOS reneging on their promise that, if you’ve paid off your year subscription but don’t want to pay indefinitely, you will not get future matches nor health info but you won’t lose access to the information that you already have including your RF matches and your health reports. Now, should you choose not to continue to pay their subscription fee, it is like you never paid them hundreds of dollars at all.. EXCEPT that they will continue to use your DNA sequences and survey results to make money by selling that information to researchers for 75 thousand dollars or more a pop. To somewhat rectify this egregious breach of trust, withdraw your permission for them to sell your information and DNA sequences to third parties. Note that they won’t allow you to withdraw from anywhere they’ve already sold your info and they intend to continue to use this information (and YOUR DNA sequences) internally.

More Egregiously, customers that continue to pay them a monthly subscription will also lose their genetic relative connections to those who completed payment under the conditions agreed apon but don’t find the service valuable enough to continue paying them infinately. Not only does this negatively affect adoptees and orphans, it also affects those citizen scientists who were conducting their own research on the illnesses in their family tree. It also affects those that paid for their medical information but didn’t realize that they have to download everything immediately or lose access to it or who didn’t understand the ramifications of their medical information at the time they got it or developed conditions after they finished paying off their agreed on amount and would like to review the information they already paid for but ignored previously.

I have withdrawn my consent for 23andMe to use my DNA or my surveys in any research efforts. I encourage anyone who is concerned about their recent breach of trust to do the same. According to the TOS, you can change your mind and withdraw consent on each kit at any time without affecting your use of the site, or changing your access to results or matches.

To refuse consent:

Click on “Account”
Click on “Settings”
Click on “Privacy/C­onsent” tab
Go to the bottom and change your consent. Several sections will open up just drill down until you get to not consenting for them to use your informatio­n for studies.You should also send an email to the Human Protection­s Administrator at
hpa@23andm­e.com
State that you are withdrawin­g consent for any of your Genetic and Self-Repor­ted Information to be used for research or commercial purposes.

It’s a sad day when a scientist has to recommend removing your data from research.

Image Credit: NASA