OP-ED

Give up Your Data to Cure Disease? Not so Fast!

flying cadeuciiThis 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 .

Medicine was always based on a relationship of two, a doctor and patient. Doctors earn trust by protecting patients’ sensitive information, so patients will share intimacies and speak freely about symptoms. How can anyone trust millions of companies holding data bases and selling personal health data? The world’s largest data information, services, and technology  company has longitudinal profiles of 500 million people. The corporation’s IPO describes buying and trading health data with 100,000 health data suppliers covering 780,000 daily health data feeds.

Current commercial “innovation” targets eliminating human and civil rights to privacy—by design. Inevitably patient trust in health professionals, hospitals, research, technology, and government is destroyed. So millions of patients act to protect privacy by hiding health information, and delaying or avoiding treatment for serious conditions like cancer, depression, and sexually transmitted diseases. Do we want electronic health records systems that drive patients away from effective treatment?

Instead commercial innovation could use technology to ensure and protect human and civil rights, and put people in charge of their data. Millions of patients will agree to enabling research queries, ensuring research they care about and privacy. This ‘New Deal on Data’ model will be equally profitable for major corporations, while benefitting individuals and supporting Democracy. See: http://civics.com/NewDealOnData/

Current technology products and IT services were designed for totalitarian government and corporate surveillance, exploiting and controlling humans by destroying fundamental human and civil rights to determine who can use personal information. Surveillance enables 1) deeper more intrusive data collection and aggregation, 2) deeper, more extensive individual profiling for hidden discrimination and data sales , 3) costly new services, treatment, and products that grant corporations and governments ‘rights’ more power than the rights of humans.

We can choose technology to strengthen individual autonomy and agency, which is also a revenue-generating engine to support Democratic governments, institutions, and corporations. Shouldn’t we choose technology that ensures and protects human rights and values, and enables massive research with patient consent?

Why do surveillance technologies used by enemies of the state have any place in the modern practice of Medicine and healthcare? Like Democracy, the purpose of Medicine and healthcare systems is to serve individuals and respect human and civil rights.

The current business model of the Internet and the world’s largest tech corporations is the collection, aggregation, and exploitation of personally identifiable information. But the downside for humans ranges from preventing trust in relationships, to secret discrimination, to imprisonment and death. Entrenched, global monopolies don’t want change, but their business models must be replaced. And people everywhere will demand it.

Governments and businesses may actually have to treat people like people, not like data on the IoT. 90% of data is human data. Technology systems that serve human needs for privacy will be just as lucrative as current exploitive data surveillance and collection technologies, but everyone wins.

Are calls for “cures” and “innovation” that use surveillance technology to collect intimate personal health information being disguised as sheep?

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PerryFlorida doc Recent comment authors
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Perry

I think the bottom line is this:

There is no privacy anymore. Unless someone is totally off the grid.