Background and Methodology: The conceptualization and initial research for this global visualization began in 2020. The research sought to document the primary comprehensive data protection and privacy legislation at the national level of jurisdictions / countries, using original source documents and other primary sources, such as interviews. Key data protection and privacy treaties and conventions
This comprehensive report and proposed bill text is focused on the Privacy Act of 1974, an important and early Federal privacy law that applies to the government sector and some contractors. The Privacy Act was written for the 1970s information era — an era that was characterized by the use of mainframe computers and filing cabinets. Today’s digital information era looks much different than the ’70s: smart phones are smarter than the old mainframes, and documents are now routinely digitized and stored and perhaps even analyzed in the cloud, among many other changes. The report focuses on why the Privacy Act needs an update that will bring it into this century, and how that could look and work. This work was written by Robert Gellman, and informed by a two-year multi-stakeholder process.
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.
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.
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.