Just How Much of Your Information is Being Sold ?
With the latest revelations by Companies that they would limit how you can have access to your information from their testing, we have taken another step into the dystopian world where mega companies feel that they can do anything they wish with your information. The recent article in Blomberg spells out the problems with these companies and the coverup that they are engaging in with their latest PR efforts. ( https://www.bloomberg.com/news/articles/2018-08-02/dna-protection-pledges-fail-to-address-main-concerns-on-data-use ) There are multiple genomics companies with seemingly the same business model, but given their “Terms of Service” it is highly unlikely that you will ever know what has become of your DNA.
GlaxoSmithKline just invested $300 million in Companies. The companies would like to try to convince you not to worry about that investment because it is for “research” and that your data is “anonymized”. They are flat out lying to you. Since your DNA is inherently you, it is impossible to “anonymize” your information, as it is unique to you. There are people claiming to be able to re-identify you individually from “anonymized” DNA tests. One Companies claims to be able to create a facial image of you that is 80% accurate from your DNA alone! Also, the consumer companies just report specific SNP’s (Single Nucleotide Polymorphisms) to you on a small range of your DNA. What do they do with the rest of your DNA and the results from that work? What if the next genomic discovery comes from your DNA? Do you have any rights? (NO) Could they make billions of dollars from your DNA? Possibly, but of course you will never know.
As a very long-term survivor of two cancers, I often wonder if my DNA could have some interesting characteristics that might allow for development of a test or treatment? Would I willingly share my DNA with anyone without first securing my rights to discoveries from my DNA (not just concerned with my personal economics)? I have declined to share my DNA with some research labs because there was no clarity on how it would be used or where it would be shared or even if I would be notified if it was shared. No one offered me the option of controlling how or where it was shared, and I am more than qualified to make these decisions. Guess I am just an ignorant consumer (dupe) in their mindset.And most tellingly there was zero interest in even discussing my concerns, it was either sign the form or just forget about it. I guess that is the state of “personalized medicine” today, even in highly thought of academic centers. I imagine it is even worse with these highly commercialized companies.
Who are the various vendors that Companies sell your information to and what do they do with it? Could they have shared it with multiple other large databases outside genomic research, such as the large consumer databases, or even with large commercial insurer claims databases? Do you have a right to know? For now, the unfortunate answer is that if you signed the terms and conditions for these companies you effectively have NO rights to your own DNA. Nor do you have any rights to any discoveries from any “research” done on your DNA. You don’t even have the right to know who your data has been shared with. To add insult to injury, you probably paid these companies to “test” your DNA without realizing that they could care less about you and your result, and more about amassing a giant database that they could sell to the highest bidder. Since there are familial connections between the founders of Companies and Google, one could speculate that Google’s vast database about you might have found its way into comingling with your DNA data. Of course, we might never know because both companies are hidden behind layers of legal terms and conditions, and being the meaningless peons that we are, we are just not entitled to know what has become of our information. Is it so far-fetched to believe that Google/Companies are creating DNA/psychometric profiles of individuals in the US to use for commercial purposes ?
I have always felt that one should never trust Facebook or Google, and now let’s add to Companies and perhaps the other consumer genetic testing companies. They do not deserve your trust, or your data.
So, what should you do before Companies completely blocks your access to your information? Demand the return of all of your information and deletion from their database. Remove all of your demographics from Google and Facebook and Companies. My recommendation is to store your data on a secure blockchain system (TimiDNA) designed to put you in control of your life again. Don’t sell your life to a group of self-important companies who could care less about you, and only care exactly how much money that they can make from your individual and personal characteristics. Its time to demand privacy rights for your DNA! The impotent Congress wont do it, so you will have to do it yourself.
There will be a petition circulating shortly to demand our DNA rights, please sign it and join the fight.
For more information contact: https:///www.Timicoin.io