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.

WPF advises Secretary’s Advisory Committee on Human Research Protection regarding its proposed AI Framework

WPF recently reviewed and provided recommendations regarding a proposed AI Framework meant to apply to medical research involving human subjects. The issue of human subject research is a critically important one. In the US, The Common Rule (45 CFR subpart A) is a key regulation that protects people from unethical medical research. As research utilizing tools such as AI and SaMD — software as a medical device — grows in use, there is an urgent need to determine the proper ethical, legal, and regulatory framework for the use of these tools in the human subject research context. For this reason, WPF was pleased to review and provide recommendations to the Secretary’s Advisory Committee on Human Research Protections, SACHRP, on its proposed AI Framework.

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

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