direct-to-consumer (DTC) tests

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Eaten Alive: A Patients’ Perspective on De-Identification of Personal Health Information

In 2018, the majority of people do not know that their PHI, like their EHR data, prescription data, insurance claims, and genetic data via direct-to-consumer (DTC) tests, are de-identified and sold for research and commercial purposes at massive profits. Medical health data trading is a multi-billion dollar industry. The process of de-identification supplies data that may be aggregated for a variety of analyses, such as basic scientific discoveries, policy & legal reviews, process refinement, pharmaceutical marketing, and other efforts. Data de-identification isn’t new but it is rampant. I’m gravely concerned about the free-for-all that is de-identification. You should be too.

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