DNA “Services” sell your genetic info to Big Pharma

From blog: The Legal Genealogist (link at bottom)

If you don’t want your data sold to Big Pharma (new for 2015): Many genealogists — because of our general interest in research — are perfectly happy to have their DNA data used for health- and medical-related research. But it’s important to know just who might be getting the data in order to do the research. It isn’t, say, the National Institutes of Health, with the benefits and findings from the research universally shared with all Americans. It’s the pharmaceutical industry, which will patent its findings and charge what the market will bear for any treatments or drugs that result. There’s nothing legally wrong with this — but it makes some of us uncomfortable. So understand what you’re agreeing to if you test. The terms of use at 23andMe allow it to sell the data of anyone who has consented to participate in research15 and, in fact, it has just entered into two agreements with major pharmaceutical companies to do just that.16 And it can share your data combined with that of all other 23andMe users even if you didn’t consent to research. Those who agree to participate in AncestryDNA’s research project agree to allow their genealogical, genetic, and health information to be used and shared with third-party researchers17 — which can include private companies like the pharmaceutical industry. Both companies will require additional specific consent to share your personal identifying information (name, address and the like). If you don’t want your data used this way, you should only test with Family Tree DNA. Its terms of use (from parent company Gene by Gene) provide that you will be individually asked for consent if it ever wants to share your genetic data with anyone.18




2 thoughts on “DNA “Services” sell your genetic info to Big Pharma

  1. This is why I do not do those “quizes” that are on various social medias and will never send in my DNA for testing – unless it is vital to the survival of one of my children. There is more than enough available data about me out there because of my various blogs.


    • I participated in the Nat Geo testing when it first was offered; it only identified mtDNA. I fall into one of the smaller European groups: no surprise there. I would do further testing if it involved reputable Asperger research. I wouldn’t mind contributing to scientific inquiry rather than have the quasi- hysterical approach of psychology continue to dominate. I’m old enough that where my genetic info goes is of little consequence. I do understand your position. I wouldn’t consider it if Asperger wasn’t a “tradition” in my family – LOL

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s