See the full article at ProPublica.org: How a Lone Grad Student Scooped the Government and What It Means for Your Online Privacy
Sobering. Silicon Valley decides what privacy rights we have online, in clouds, in electronic health systems, in apps, on social media, and on mobile devices. Our fundamental Constitutional rights to privacy—to control personal information about our lives, minds, and bodies—is defended by lone grad students, European Data Commissioners, a few small privacy advocacy organizations, the FTC, and a handful of whistleblowers.
A PREDICTION: Selling intimate cyber-profiles will end when the public discovers that NOTHING about their minds and bodies is private.
The lack of control over sensitive health data will be the nation’s wake-up call to rein in Silicon Valley and restore the right to be ‘let alone’. See: Olmstead v. United States, 277 U.S. 438, 478, 48 S.Ct. 564, 572 (1928) (Brandeis J., dissenting).
- Cyber-profiles of our minds and bodies contain far more sensitive information than mothers, lovers, friends, Rorschach tests, or psychoanalysts could ever reveal.
- “If you are not paying for it, you’re not the customer; you’re the product being sold”, see Andrew Lewis at: http://www.metafilter.com/user/15556.
- 35-40% of us are “Health Privacy Intense”—-a very large minority; see Westin’s keynote slides from the 1st International Summit on the Future of Health Privacy:http://tiny.cc/9alvgw
THE TIPPING POINT will be when the public discovers that electronic health systems facilitate cyber-theft, data mining, data sales, ‘research’ without consent, and allow thousands of strangers to snoop in millions of patient records (think George Clooney and more: http://www.foxnews.com/story/0,2933,348988,00.html).
Health data is the most sensitive personal information on Earth. Everything from prescription records to DNA to diagnoses are HOT BUTTONS.
- SELLING GENETIC DATA IS A HOT BUTTON: Texas families sued the state to stop it from selling the DNA in bloodspots collected at babies’ births to researchers, the military, and private corporations—see: http://www.texastribune.org/texas-state-agencies/department-of-state-health-services/dshs-turned-over-hundreds-of-dna-samples-to-feds/
- OPENING PSYCHIATRIC RECORDS TO THOUSANDS OF HOSPITAL SYSTEM EMPLOYEES IS A HOT BUTTON: Partners HealthCare system in Boston requires sensitive records of trauma and abuse to be mixed into patients’ general medical records, enabling thousands of staff, from nurses to clerks to radiologists, to read them. See:http://patientprivacyrights.org/2012/06/2-part-story-on-julie-who-spoke-at-the-2nd-international-summit-on-the-future-of-health-privacy/ andhttp://www.boston.com/whitecoatnotes/2012/06/21/clipboard-who-should-have-access-mental-health-records/fHb9nH5e4TcW7DdQLdTCtM/story.html
Instead of enabling patients to decide which physicians or researchers they want to see their health records, corporate and government data holders decide who can use and sell Americans’ sensitive health data—-upending centuries of law and ethics based on the Hippocratic Oath, which requires physicians to ask consent before disclosing any information.