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The answer may not be as simple as one would think. Have you used a commercial genetic testing service? Have you agreed to let your cancer provider, your physician, your academic medical provider or your employer have access to your DNA or genetic material from a biopsy, or leftover tissue from a procedure for “experimental” use. Have you agreed to participate in a genomic population study? Or maybe you just wanted research your ancestry with any one of many services available? There are any number of ways that any number of labs might have your DNA results available for testing purposes. What might those labs do with your DNA results? What happens with the information derived from your DNA? Most (but not all) services state that they compile information from “de-identified” DNA sequencing for “research or other purposes”. Did you read the privacy practices of the company? Did you read the terms of service? Do you even know where to find those documents? Unfortunately, if you do find the documents you may need an advanced degree (maybe a JD?) to sort through and interpret the disclosures with any surety. Having read a few of these (and they are all different) I will have to admit that it is incredibly easy to get lost in the legalese between the “Terms of Service” and the “Notice of Privacy Practices” as well as any other legal terms thrown in by the lawyers.
You might be very surprised what happens with your DNA information and how the information derived from that DNA might be utilized. The recent arrest of an accused murderer in California should give you pause about who might have access to your DNA data and how it could be used in ways you never anticipated. In most of the “Terms of Service” you are allowing the testing companies to share your data with unidentified third parties (could that be Google, Facebook, or some other unnamed organization)?
You might be further surprised that you have given up your rights to any research, discoveries or treatments derived from your DNA results. In most testing companies, you do give up these rights by default. This is closely akin to what Google and Facebook do with your data unless you actively opt out (and even then, who knows).
So, it’s quite generous of you to donate your DNA results to nebulous “research” organizations who then own whatever they derive from your DNA results. This could include treatments or cures for certain diseases (priced of course at the current rate of $140,000-$1,000,000), but you won’t ever see any of that money; and should you develop a disease you would not receive a discount on the treatment either.
We at Timicoin/TimiHealth feel there is a better option, store your genetic information on a purpose-driven and secure blockchain system called TimiDNA. In this way, you can decide who sees, and more importantly, who utilizes your DNA results. You can decide to license your results for research if you want but retain the rights to your own DNA. Given that DNA testing will become progressively more ubiquitous in healthcare, it is imperative that people are given the opportunity to control their own data.
Last modified (UTC): July 10, 2018 5:56 PM