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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. The most current effort to turn personalized medicine into a reality is the Precision Medicine Initiative (PMI), which will collect and share biospecimens and health data from over a million volunteers for research — this report analyzes the privacy protections for this initiative.

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.