How Opt-Out of the 23andMe GSK Deal

Joyce Lignell
Sep 5, 2018 · 3 min read

On Wednesday, July 25, 2018 23andMe and GSK announced an exclusive, multi-year deal where GSK has full access to 23andMe’s rich database of DNA data gathered from their estimated 5 million members. With access to the data, GSK will become 23andMe’s exclusive collaborator for drug target discovery programs.

In that same announcement 23andMe went on to say that their customers are in control of their data. To quote it precisely: Per 23andMe, “Participating in 23andMe’s research is always voluntary and requires customers to affirmatively consent to participate. For those who do consent, their information will be de-identified, so no individual will be identifiable to GSK.”

For someone who doesn’t fully understand the implications — this sounds as though 23andMe is in fact putting the wishes of their members first and they are in control of their data, but to really clarify things, let’s break it down:

1. As stated in the first half of the 23andMe statement: “Participating in 23andMe’s research is always voluntary and requires customers to affirmatively consent to participate.” When I read that, I am inclined to think that I can decide to opt-in (meaning I’m not automatically part of the data pool unless I authorize it). But that’s not the case. 23andMe later clarifies that members must opt-out meaning that you have to log into your 23andMe account, go to Preferences. Once there, the Research section should give you the option to remove your consent. 23andMe forces you to take overt action to opt-out.

2. The second half of that statement goes on to say, “For those who do consent, their information will be de-identified, so no individual will be identifiable to GSK.” (making it sound like you got the opportunity to opt-in), Let’s take a step back and remember we are talking about DNA data. It is the very essence of you. It is your personal blueprint, that makes you distinctly unique and different from every other person on earth… how can that be anonymized? It can’t. Like your fingerprint is your unique identifier or your face (think how Apple iPhones can now use facial recognition) your DNA is the ultimate unique identifier that describes in detail at the DNA level all that is YOU. By sheer definition, that can’t be anonymized.

For some this is an altruistic, do it for the greater good move. And in many ways, you can think of it like that, but why is it their right to decide that for you? Why do they get to make such a broad sweeping decision for their entire population (unless you are one of the ones who took the time to opt-out)?

As I was re-reading their Terms of Service many things jumped out at me that I will save for a future piece, but for now, let me shine the light on their very last statement in Section 8. 23andMe Privacy Statement and Disclosure of Information, and I quote: “Finally, 23andMe may, in its sole discretion, restrict access to the website for any reason.” So, the question of the day is: Has anyone actually tried to either opt-out or even more final than that, tried to delete their data from 23andMe? At any time, they can restrict access to their website preventing consumer actions. It’s my hope they wouldn’t do this, but I can tell you that they have turned off 3rd party API’s or data connections such as the one Timicoin/TimiHealth put in place so that you could port your data over to our DNA solution that would empower every consumer with control over your data so that you could either choose to sell or not sell it.

At Timicoin/TimiHealth you have to Opt-in to participate. If a purchaser of data such as a pharmaceutical organization wants your data, we bring you the purchase request. You get the opportunity to financially benefit on your data if you so choose. Now isn’t that the way it should be? That is the future. Your DNA data is yours. Fight for your asset. Over the coming days and weeks, we will be ramping up our efforts to support every individual’s rights towards ownership of his or her DNA. Check out Timicoin.io and join us.

Joyce Lignell

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Mother, entrepreneur, innovator and ocean lover. Passionate about bringing about change in healthcare through Blockchain