Most consumers today understand that the companies they interact with gather details about their lives, from what they buy to where they go and what they watch. Few realize, though, that a sophisticated system of medical data gathering, made up of personal health details most people would not willingly share, has evolved into a multibillion-dollar business. “Soon after you tell your doctor about an intimate medical problem,” writes journalist Adam Tanner, “data about your condition are sold commercially to companies that have nothing to do with your treatment.”
Tanner traces many other key developments that have affected the medical data business, including how, beginning in the 1980s, it became commonplace for the pharmaceutical industry to track doctors’ prescribing habits; the lawsuit against IMS that started in Vermont with the intention of limiting data miners’ activities and ended up in the Supreme Court; and the rise of electronic prescriptions and the digitizing of health records, which “still communicate in a babble of different languages, crippling patient ability to access their lifetime records.”
Adam Tanner is writer in residence at Harvard University’s Institute for Quantitative Social Science and the author of What Stays in Vegas: The World of Personal Data—Lifeblood of Big Business—and the End of Privacy as We Know It, which The Washington Post named one of fifty notable works of nonfiction in 2014. Tanner served as a Reuters correspondent from 1995 to 2011, including as bureau chief for the Balkans (2008–2011) and San Francisco (2003–2008). He was also posted in Berlin, Moscow, and Washington, DC. He has appeared on CNN, Bloomberg TV, MSNBC, CNBC, NPR, the BBC and VOA; has written for magazines including Scientific American, Forbes, Fortune, MIT Technology Review and Slate; and has lectured across the United States and internationally. For the 2016–17 academic year, he is the Snedden Chair in Journalism at the University of Alaska Fairbanks.