Health Privacy

About health privacy, World Privacy Forum key health privacy resources

The World Privacy Forum is extremely active in health privacy, with a long and successful track record of work in this area. We have done groundbreaking work in the area of medical identity theft, as well as substantive analysis and education on critical privacy aspects of health data such as medical research, genomics, and many other issues.

Some of our most frequently accessed health privacy resources include:

* A Patient’s Guide to HIPAA

* Medical Identity Theft Page (resources, reports, more)

* Health privacy tagged materials

* HIPAA tagged materials

* Electronic Health Records tagged materials

* Common Rule and Human Subject Research Protection tagged materials

* Genetic privacy tagged materials

We have many more publications and resources. For a full list of topics and publications, see our key issues page.

See below for health privacy news and content by date.

Dec 07 2021

WPF advises OSHA re: employee vaccination information

The U.S. Occupational Safety and Health Administration (OSHA) has published its proposal regarding how employee vaccination information will be treated by employers. WPF’s analysis has found a meaningful loophole in privacy protections, and has proposed a remedy to OSHA.

Sep 15 2021

WPF urges HHS National Vaccine Advisory Committee to extend privacy protections of vaccination information

In public testimony September 15, 2021, WPF’s Executive Director urged the Department of Health and Human Services National Vaccine Advisory Committee Committee to establish broadened protections for covid-19 vaccination data, including extending the existing CDC Guidance (from May 2021) prohibiting commercial marketing use of vaccination registration information or other vaccination data. The intersection between HIPAA privacy regulations

Aug 13 2021

WPF supports CDC guidance prohibiting use of vaccine recipients’ data for commercial marketing purposes, urges that protections are extended to proof of vaccination systems

WPF’s Executive Director spoke today before the US Center For Disease Control’s ACIP Committee regarding privacy protections for vaccine recipients’ data. WPF supported the CDC’s prohibition on the use of vaccine recipient data for commercial marketing purposes. The CDC’s Vaccination Program Provider Requirements, published in May 18, 2021, specifically prohibits the commercial marketing use of

Aug 04 2021

C20 – G20 Global Dialogue on Health, WPF statement

On August 4, 2021, WPF participated as a member of the Civil20 – G20 Global Dialogue on Health. The dialogue was moderated by C20 Global Health co-chair Rachel Ong, with concluding comments by co-chair Kurt Frieder. Davide La Cecilia, Diplomatic adviser to the Italian Minister for Health and former Ambassador of Italy to Ukraine, participated

Jul 01 2021

WPF urges FTC Chair and Commissioners to update FTC Health Breach Notification Rule

The FTC held an historic open FTC Commission meeting, during which the Chair and Commissioners conducted their business openly and also provided an opportunity for public comments. The World Privacy Forum was selected to provide a public comment, which focused on the need to update the Health Breach Notification Rule.

National IDs Around the World — Interactive map

About this Data Visualization: This interactive map displays the presence...
Report: From the Filing Cabinet to the Cloud: Updating the Privacy Act of 1974

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.
COVID-19 and HIPAA: HHS’s Troubled Approach to Waiving Privacy and Security Rules for the Pandemic

The COVID-19 pandemic strained the U.S. health ecosystem in numerous ways, including putting pressure on the HIPAA privacy and security rules. The Department of Health and Human Services adjusted the privacy and security rules for the pandemic through the use of statutory and administrative HIPAA waivers. While some of the adjustments are appropriate for the emergency circumstances, there are also some meaningful and potentially unwelcome privacy and security consequences. At an appropriate time, the use of HIPAA waivers as a response to health care emergencies needs a thorough review. This report sets out the facts, identifies the issues, and proposes a roadmap for change.