Protecting Our Civil Rights in the Era of Digital Health
See the full article by William Pewen in The Atlantic: Protecting Our Civil Rights in the Era of Digital Health
Bill Pewen has written the BEST BRIEF HISTORY OF HOW HEALTH INFORMATION PRIVACY WAS ELIMINATED I HAVE EVER SEEN, from diagnoses to prescription records to DNA. Terrific to see this in the Atlantic!
He shows how technology-based discrimination works, and makes the case that selling people’s health information/profiles is a major business model for the largest technology/Internet corporations: “Millions [of people] are beginning to recognize that they are not the customers, but the product.”
“[A]dvancing technology was opening a virtual Pandora’s Box of new civil rights challenges. At the crux of these was the fact that scientific progress has been enabling increasingly sophisticated discrimination.” ………”Our experience with GINA helped to reveal the tip of an emerging threat — the use of modern data systems to create new forms of discrimination — and our concern focused on the use of personal medical data. While genetic data expresses probabilities, other parts of one’s medical record reflect established fact — an individual’s diagnoses, the medications one has used, and much more.”
“Genetic discrimination comprised just one of a number of game-changing technological challenges to civil rights. Confronting these presents new obstacles, and points to the need for a paradigm shift in our approach to prevent such inappropriate bias.”
He concluded with a call for “a 2nd civil rights bill of the 21st century”, based on key principles and tests to evaluate whether technology harms people:
· First: “certain harmful acts must be clearly prohibited”
· Second: “the possession and use of personal medical data should be restricted without an individual’s consent”.
To determine “whether an application of technology undermines existing civil rights statutes,…consider its potential to impose harm in terms of three tests.
· First: “the immutability of a trait. Profiling based on an unchangeable [genetic] characteristic should raise questions, as the ability of an individual to impact these is absent.”
·Second: “relevance…..[for example] we would not permit such irrelevant traits as race or gender to be used to discriminate in the hiring of flight crews.”
·Third: “the presumption of a zone of privacy. …neither personal medical information nor its correlates should be considered in the public domain.
Senator Snowe and her top health expert, Bill Pewen, are real privacy heroes, responsible for key new consumer privacy and security protections in the technology portion of the stimulus bill (HITECH). The bipartisan Coalition for Patient Privacy worked very closely with them to support consumer protections they championed.