Abstract: Few patients know it, but our medical data are for sale. What we tell doctors, prescriptions at the pharmacy, the results of blood tests, details from our insurance claims -- all are commercial products bought and sold in a trade hidden from the public. The companies assembling and selling access to hundreds of millions of patient dossiers say this hidden multi-billion dollar business will help advance science. In reality, the trade is overwhelmingly about selling and marketing new drugs, with few scientific advances to date. These files are anonymized, but advances in computing make it increasingly possible to re-identify patients whose medical data are aggregated into commercials dossiers. The paradox of medical data today is that what we really want– easy access anywhere to our comprehensive medical histories when we and our doctors need it most – remains elusive, while what we might wish to avoid – others trading intimate details about our health – is dramatically expanding.
Bio: Adam Tanner was a fellow at writer-in-residence at Harvard from 2011-2017, first at the Nieman Foundation, then at the Institute for Quantitative Social Science, where he worked closely with Professor Latanya Sweeney. At IQSS he wrote two books on the business of personal data and privacy Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Records (2017) and What Stays in Vegas: The World of Personal Data - Lifeblood of Big Business - and the End of Privacy as We Know It. He served as a Reuters news agency correspondent from 1995-2011, including as bureau chief for the Balkans (2008-2011), San Francisco bureau chief (2003-2008), and correspondent in Berlin, Moscow and Washington D.C. I have appeared on CNN, Bloomberg TV, MSNBC, CNBC, NPR, the BBC and VOA, written for magazines including Scientific American, Forbes, Fortune. MIT Technology Review and Slate, and lectured across the United States and in Canada, Britain, the Netherlands, Germany, Hong Kong, Macao, Indonesia, Thailand, Singapore, Japan, and India. He was also the 2016–17 Snedden Chair in Journalism at the University of Alaska Fairbanks.