Genetic Privacy

WPF suggests solutions to OMB for handling Commercially Available Information, including exploring a formal, inclusive Voluntary Consensus Standards process to address challenges

WPF submitted comments regarding how commercially available information (CAI)  — also known as data broker data — will be handled by U.S. Executive Agencies. The Request for Information from OMB was an important opportunity to comment on a topic that has only rarely been opened for public comment. OMB Request for Information regarding Executive Branch

WPF advises National Institutes of Health re: Genomic Data Sharing Policy

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.

Op Ed on Employer-Sponsored Wellness Programs

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

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.