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.

The New Healthcare Fraud Continuum: Keynote

This coming Thursday, WPF Executive Director Pam Dixon will give a keynote speech on health privacy and security, “The New Healthcare Fraud Continuum.” Based on her latest research in health privacy, this talk will be Dixon’s first talk about the new fraud continuum, what it is, how it operates, what it means to providers and patients,

WPF files comments on US government proposal on confidentiality of drug/alcohol patient records, urges revisions

The World Privacy Forum commented on an important proposal to make changes to the existing rules regarding the confidentiality of alcohol and drug abuse patient records. The proposal is from the Substance Abuse and Mental Health Services Administration (SAMHSA), part of the US Department of Health and Human Services. These proposed rule changes are important, as the current

(Updated) Urgent for California Parents: Detailed student SSNs, medical information to be released by a court

Update for March 3, 2016: This week a judge has ordered that the approximately 10 million records of California students held by the California Department of Education will not be turned entirely over to a group of community nonprofits in the Morgan Hill case. Instead, the judge ordered that several smaller databases will be turned over

Genetic Information Nondiscrimination Act (GINA): WPF files comments on wellness program privacy, purchase of employee genetic data, more

The World Privacy Forum has filed extensive comments on the proposed changes to how the Genetic Information Nondiscrimination Act will be interpreted. Our comments focus on how the proposal will impact wellness program privacy, as well as family and spousal privacy. In our comments, we discuss our concerns with a variety of aspects of wellness program privacy, including the fact that much data from wellness programs falls outside of HIPAA protections. We also have strongly urged the EEOC to not allow employers to purchase genetic information about employees from third parties without consent, among other items related to this issue.