National Institutes of Health

WPF paper on collective privacy accepted to Privacy Law Scholar’s Conference

WPF is pleased to announce that Executive Director Pam Dixon’s paper on the topic of collective privacy was selected for inclusion at the Privacy Law Scholars Conference from a large and highly competitive field. The paper is now available at the PLSC website as a confidential download for conference attendees. PLSC provides privacy scholars the

WPF urges National Institutes of Health to expand privacy guidance for researchers

WPF is urging the National Institutes of Health to do more to properly advise the research community and to protect data subjects in its draft guidance on data management and sharing. WPF is asking for changes to the NIH guidance because in the US, much health research data in the hands of researchers is not subject to the privacy or security rules in HIPAA.

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