One of the most common questions we receive is: what does HIPAA compliant mean? Well.. If a company or entity or health app is not covered by HIPAA, it may still say that it is “HIPAA compliant.” HIPAA compliant does not mean the same thing as being a HIPAA- covered entity. If you see the
WPF filed comments to the National Institutes of Health (NIH) regarding its Genomic Data Sharing Policy. WPF recognizes that NIH is attempting to create a reasonable standard. Nonetheless, WPF urged NIH to better “future proof” its genomic data sharing proposal, and in particular requested NIH to look further into key areas, including the impacts of “genomic big data” and the limits of deidentification.
Today The Guardian published an op-ed I wrote about employer-sponsored wellness programs. You can find that op-ed here. I have researched and written about HIPAA, health plans, wellness, predictive analytics, and big data for years now. A lot of my work coalesced together when Robert Gellman and I researched and wrote the Scoring of America
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.
WPF Comments on Genomic Data Sharing Policy for sharing, for research purposes, of large-scale human and nonhuman genomic data (NIH) Background: The National Institutes of Health published a draft Data Sharing Policy for human and non-human genomic data. The sharing is for research purposes. The World Privacy Forum comments focus on human genomic privacy. Our