Genetic Privacy

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.

Public Comments: May 2012 – WPF Asks Presidential Commission to Protect Genetic Privacy

WPF filed comments with the Presidential Commission for the Study of Bioethics today urging the Commission to recognize the need for enhanced genetic privacy protections in a digital world. WPF noted that “The increasing identifiability of genetic data presents major privacy issues for research activities that must be acknowledged and addressed.” WPF suggested four key ways that Certificate of Confidentiality programs could be enhanced for privacy protection, and urged the Commission to speak out about the importance of protecting patient privacy in research activities involving genetic information. “The Commission should advocate providing patients with reasonable controls over research uses of their data as electronic records develop and spread throughout the health care system.” Public comments may be submitted to the Commission until May 25, 2012.

WPF Asks Presidential Commission to Protect Genetic Privacy

Genetic Privacy | Bioethics — WPF filed comments with the Presidential Commission for the Study of Bioethics today urging the Commission to recognize the need for enhanced genetic privacy protections in a digital world. WPF noted that “The increasing identifiability of genetic data presents major privacy issues for research activities that must be acknowledged and addressed.” WPF suggested four key ways that Certificate of Confidentiality programs could be enhanced for privacy protection, and urged the Commission to speak out about the importance of protecting patient privacy in research activities involving genetic information. “The Commission should advocate providing patients with reasonable controls over research uses of their data as electronic records develop and spread throughout the health care system.” Public comments may be submitted to the Commission until May 25, 2012.