Genetic Privacy

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.

Public Comments: November 2013 – WPF Comments on draft Genomic Data Sharing Policy (NIH)

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

Debating the future of privacy

Arizona School of Law — Pam Dixon participated as a discussant and contributor to the Arizona School of Law’s private workshop on the topic of the future of privacy. Key areas of discussion included the European Union’s Right to be Forgotten proposal, consent and health privacy, and Do Not Track.