WPF Report – Privacy, the Precision Medicine Initiative, & the All of Us Research Program: Will Any Legal Protections Apply?

Medical treatments tailored to each individual’s physiology and genetic history have long been a dream, but this dream is data-intensive. Until recently, the lack of a broad set of detailed health information from a wide variety of research subjects stymied medical research efforts. The most current effort to turn personalized, tailored medicine into a reality is the Precision Medicine Initiative (PMI), which now includes the All of Us research program. It is this full PMI/All of Us research program, begun in 2015, that hopes to gather an unprecedented amount of detailed biomedical data sets — including biospecimens and detailed personal health information — from over one million volunteers, the largest group of medical research volunteers that has been assembled thus far in the United States, if not the world.

Collecting, maintaining, reporting results back to research subjects/participants, and sharing biospecimens and health data from over a million volunteers for research requires meaningful privacy protections. This report analyzes those protections.

WPF Report — The Scoring of America: How Secret Consumer Scores Threaten Your Privacy and Your Future

To score is human. Ranking individuals by grades and other performance numbers is as old as human society. Consumer scores — numbers given to individuals to describe or predict their characteristics, habits, or predilections — are a modern day numeric shorthand that ranks, separates, sifts, and otherwise categorizes individuals and also predicts their potential future actions. This new report by Pam Dixon and Robert Gellman explores this issue of predictive scores and privacy.

WPF Report — Paying out of Pocket to Protect Health Privacy: A New but Complicated HIPAA Option; A Report on the HIPAA Right to Restrict Disclosure

This Jan. 30, 2014 report discusses a new right to restrict disclosure of health information under the updated HIPAA health privacy rule. The new provision called “Pay Out of Pocket,” also called the “Right to Restrict Disclosure” gives patients the right to request that their health care provider not report or disclose their information to their health plans when they pay for medical services in full. Navigating the new right will take effort and planning for patients to utilize effectively. This substance of this report is about the new patient right to restrict disclosure, and how patients can use it to protect health privacy.