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Dec 18 2013

Data Brokers Opt Out List

Top Ten Opt Out
Opt Out Possible
Partial Out Out
FCRA Opt Out
No Opt Out
Opt Out Unclear

Mar 02 2013

Privacy in India Video Series: WPF

India and Privacy — WPF has researched privacy extensively in India, and has documented a number of key privacy issues in a video series. So far, 5 videos in the series have been released. All of the videos were shot on location in India and feature Pam Dixon, with videographer Blake Hamilton. These videos offer a rare and early glimpse into privacy interactions and issues in India

Jun 15 2012

Health Information Exchange in California

HIE interactive map — WPF has posted a new interactive map of health information organizations and exchanges in California. This is a map-in-progress, and we will be adding data to the map in stages.

Apr 20 2012

Consumer Tips: Medical Identity Theft- What to Do if You are a Victim (or are concerned about it)

World Privacy Forum information and materials on medical privacy topics.

Apr 20 2012

FAQ: Medical ID Theft: How to Recover if You’re A Victim – And What To Do If You Are Worried About Becoming a Victim

Consumers can learn about Medical Identity Theft, what how to avoid it, and what actions to take if you are a victim.

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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. 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 Precision Medicine Initiative and Privacy: Will Any Legal Protections Apply?

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.
Report — US – EU Privacy Shield Analysis: Winners and Losers

The report US- EU Privacy Shield Analysis: Winners and Losers was published April...