What Does it Mean to have Your Data “Deidentified” ? And Why That is NOT Possible with Your DNA
The genetic testing companies desperately want to reassure you that when they share your DNA data with pharmaceutical manufacturers, or other entities, that they have stripped away “identifiers” so that you cannot be individually identified. Typically, this process involves “stripping” from a data stream items of information such as your name, age, race, sex, address, credit card, etc. While in the case of other types of information, this process might (and I stress might) make it difficult to individually identify you, it does NOT guarantee that you cannot be identified. Of course, they typically also brag that they are HIPAA (Health Insurance Portability Accountability ACT) compliant. What does that really mean? HIPAA is a weak effort at health data protection that was originally designed to speed up payment to doctors, and has failed to protect your data, just look at the nearly daily leaks of health information from health providers.
However, with DNA, stripping away the usual demographic identifiers does not truly de-identify your information. Why? Because your DNA is inherently unique to you, and since it is unique, there is no way that it could not be used to individually identify you. Researchers have suggested that in fact they can individually identify you by combining information from databases that are commercially available with demographic databases and your DNA information to identify you (take that case of the accused criminal in California, identified from national databases of genomics and demographics). I have personally seen the depth of information available in these national data bases and I think we should all be afraid of this possibility.
So, how should you view the “promises” from the genetic testing companies that they are safeguarding your identity? Should you be afraid that your DNA information could be used for nefarious purposes? Should you be worried that your data could be used to create a multi-billion-dollar company based on selling your DNA? What happens if Glaxo SmithKline (GSK) discovers a new treatment based on your DNA, will they offer you treatment for free or just develop a treatment for which they will charge $100,000 or $1,000,000?
You must ask yourself, why are you paying companies to take your information, create billions of dollars of value for themselves all with the false promise of doing the right thing with your data. You should have the choice to decide what is done with your data and who it is shared with. How can you take back your data?
TimiHealth has created TimiDNA as a safe blockchain-based repository for your data which will allow you to be paid for the use of your information for research or drug discovery. Take back your DNA and keep it safe. Monetize it yourself and don’t allow some anonymous company to make money off of your personal DNA.