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.

Analysis & Report | Redress Revisited: Has the Privacy Shield Agreement Between the U.S. and the EU Been Fatally Undermined by President Trump’s Executive Order 13768?

This analysis is an in-depth look at the January 2017 Executive Order 13768, Enhancing Public Safety in the Interior of the United States, and its interaction with two laws, the Privacy Act of 1974 and the Judicial Redress Act of 2015. Regardless of the reasons underlying why the order was written, a key question this analysis considers is if the order damages the EU-US Privacy Shield agreement, and what that means.

When TVs watch you: What we learned from the FTC’s VIZIO case

Television maker VIZIO is paying $2.2 million in penalties to settle charges after the FTC and the New Jersey Attorney General’s office brought a complaint against the company for violating its customers’ privacy. The complaint against VIZIO stated that the company collected detailed information on millions of its customers TV viewing habits without their express consent, and that VIZIO facilitated something called “data appending,” which is when even more detailed information is added to existing customer profiles.

World Economic Forum Global Risk Report identifies cyberattacks and data theft as significant economic risks

The Global Risk Report 2017 from the World Economic Forum cites threats to global economic wellbeing ranging from natural disasters and large scale involuntary migration to — this year — risks arising from a “growing cyberdependency.” Specific risks the report calls out in this category are cyberattacks, data fraud and theft, critical infrastructure breakdown, and  “adverse

WPF to present on machine learning, privacy, and ethics at the U.S. – U.K. Sackler Forum

The Sackler Forum is jointly sponsored by the National Academy of Sciences and the Royal Society January 25, 2017 For Immediate Release WPF Executive Director Pam Dixon will present a lecture on privacy, ethics, machine learning, and society at the Sackler Forum Feb. 1 in Washington, DC. The Sackler forum is jointly sponsored by the National Academy