This new World Privacy Forum report reviews privacy law applicable to the Precision Medicine Initiative (PMI), and the large medical information and biospecimen database at its center. The HIPAA health privacy rule and its protections for individuals will not apply to PMI research activities. The key privacy concerns raised by the PMI are the lack of applicable law to govern its collection and use of individuals’ health data, the potential waiver of the patient-physician legal privilege that can shield data from disclosure through litigation, and the possibility of law enforcement access to patient records held in the PMI.
The report US- EU Privacy Shield Analysis: Winners and Losers was published April 6, 2016. Report authors: Robert Gellman and Pam Dixon You are at the report main page, where you can download the full report in PDF format. Report Links: Download full report (PDF, 9 pages) Read “report in brief” front matter below. — The Analysis in
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.
This interactive map shows in one glance the medical data breaches in the U.S. that have been reported to the U.S. government from 2009-2012. Each blue dot represents one breach. The bigger the dot, the bigger the breach. To see the detailed information about where, when, and how the breach happened, mouse over the dots, or zoom in by state.
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.