WPF files comments on Genomic Data Sharing, urges broad privacy protections

WPF filed comments today asking The National Institutes of Health to make changes to its draft Genomic Data Sharing Policy for sharing, for research purposes, of large-scale human and nonhuman genomic data. The World Privacy Forum comments focus on human genomic privacy. “We are most concerned in our comments that the NIH find a full range of privacy protections for genomic data to be used for research. We are interested in a full arsenal from encryption to certificates of confidential to civil and criminal penalties for misuse. Consent — as alluring as the idea is — cannot by itself carry all of the privacy water,” said Pam Dixon, executive director of the World Privacy Forum.

News Release: WPF asks National Institutes of Health for Changes to Its Draft Genomics Data Sharing Policy

  San Diego, November 18, 2013 —  WPF filed comments today asking The National Institutes of Health to make changes to its draft Genomic Data Sharing Policy for sharing, for research purposes, of large-scale human and nonhuman genomic data. The World Privacy Forum comments focus on human genomic privacy. “We are most concerned in our comments

News Release: New GAO data broker report discusses key WPF work on sales of mental health lists, more

San Diego — 15 November, 2013: The General Accounting Office (GAO) issued its long-awaited report on data brokers, INFORMATION RESELLERS: Consumer Privacy Framework Needs to Reflect Changes in Technology and the Marketplace. The report discusses key World Privacy Forum testimony and research. “We are pleased with the GAO report,” said Pam Dixon, Executive Director of the World Privacy Forum. “In particular, we are glad the GAO highlighted our work calling for a stop to the selling of people’s sensitive medical and health information for marketing purposes. This is a practice that is causing great harm, the GAO made the right call in pointing out new controls are needed.” This press release includes links to the GAO report, to Dixon’s Congressional testimony, and to the WPF report discussed by the GAO.

WPF Report – Data Brokers and the Federal Government: A New Front in the Battle for Privacy Opens, Part III in a series

This report focuses on government use of commercial data brokers, the implications for that usage, and what needs to be done to address privacy problems. The government must bring itself fully to heel in the area of privacy. If it is going to outsource its data needs to commercial data brokers, it needs to attach the privacy standards it would have been held to if it had collected the data itself. Outsourcing is not an excuse for evading privacy obligations. Report authors: Bob Gellman and Pam Dixon.