The recent announcement that 23andMe has struck a $60M deal with Genentech to provide 23andMe customer data for Parkinson’s disease research is, on balance, good news. The relationship between genetics and predisposition to Parkinson’s disease is still under investigation, and more insight into the molecular basis for this terrible disease will be a huge step toward providing better treatment or possibly even developing a cure. But this news should also be met with some alarm by 23andMe customers. It raises questions about how the 23andMe customer data will be queried by Genentech, what is shared, and how this consent is managed. Like many 23andMe customers I’ve agreed to participate in “Basic Research”, but now that tens of millions of dollars are being made from our collective data I have some reservations. Until there is more transparency about how customers’ data is being resold for profit by 23andMe, I am withdrawing consent from 23andMe. And I’ll show you how to as well! First, if you haven’t already you should download your raw data. 23andMe may not be around forever, or they may one day close access to it. You paid for this data, you should make sure to take ownership of it. Note: Your genomic data is the most personally identifiable data possible. Treat this data like any highly sensitive medical record or financial document. Be careful how and where you store it. You can download your data from their download page while logged in. In case the link doesn’t work, you can access the download page by clicking “Browse Raw Data” in the pulldown under your name in the upper right corner of the page, then clicking the “Download” button on the raw data page: After entering your password and secret answer, select your profile and the “All DNA” data set, then hit the “Download Data” button. The downloaded zip file should now be on your system. Store it somewhere safe.
To withdraw your consent for 23andMe to use your data for basic research, click on “Account Settings” in the pulldown under your name in the upper right corner of the page, then click on the “Privacy/Consent” tab.
If you have given consent for research you’ll see something like this at the bottom of the page:
To change it, click on the “view/change consent” link and scroll down to the bottom of their Research Consent Document. At the bottom you’ll see the link “click here to change your consent”.
Clicking that link opens up a set of radio buttons for changing your consent.
Choose the appropriate variant of “I DON’T GIVE CONSENT” and hit the “Save” button. Once saved you should now see the following under “Basic Research Consent” under the “Privacy/Consent” tab of your “Account Settings”:
If you want to take it a step further and have 23andMe destroy the your saliva sample they have stored in cold storage, there’s a button here for that, too: