By DEBORAH PEEL, MD
This weekend the NYTimes published an editorial titled Give Up Your Data to Cure Disease. When we will stop seeing mindless memes and tropes that cures and innovation require the destruction of the most important human and civil right in Democracies, the right to privacy? In practical terms privacy means the right of control over personal information, with rare exceptions like saving a life.
Why aren’t government and industry interested in win-win solutions? Privacy and research for cures are not mutually exclusive.
How is it that government and the healthcare industry have zero comprehension that the right to determine uses of personal information is fundamental to the practice of Medicine, and an absolute requirement for trust between two people?
Why do the data broker and healthcare industries have so little interest in computer science and great technologies that enable research without compromising privacy?
Today healthcare “innovation” means using technology for spying, collecting, and selling intimate data about our minds and bodies.
This global business model exploits and harms the population of every nation. Today no nation has a map that tracks the millions of hidden data bases where health information is collected and used, inaccessible and unaccountable to us. How can we weigh risks when we don’t know where our data are held or how data are used? See www.theDataMap.org .
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