Public Policy

MultiStakeholder Privacy Principles — The World Privacy Forum has led an effort to craft a set of principles with the nation’s leading civil liberties, privacy, and consumer groups. Today, the groups are releasing a set of baseline Multi-Stakeholder Principles in response to the U.S. Department of Commerce’s plan for a multi-stakeholder process on privacy. (The U.S. Department of Commerce is undertaking a representative process for bringing together members of industry and civil society to form new privacy rules.) These leading groups believe that for the multi-stakeholder process to succeed, it must be representative of all stakeholders and must operate under procedures that are fair, transparent, and credible.

WPF filed two sets of comments with the US Department of Commerce regarding the MultiStakeholder Process and the privacy topics to be taken up. The first set of comments were WPF’s formal filing of the joint Civil Society MultiStakeholder Principles on behalf of WPF and the American Civil Liberties Union, Center for Digital Democracy, Consumer Action, Consumer Federation of America, Consumers’ Union, Consumer Watchdog, Electronic Frontier Foundation, National Consumers’ League, Privacy Rights Clearinghouse, and US PIRG. The second set of comments were WPF’s own comments to the Department. WPF urged the Department to employ a fair process, choose focused topics, and to apply the full range of the Consumer Privacy Bill of Rights to each topic.

Stop SOPA & PIPA —- The World Privacy Forum is deeply concerned about the profound, far-reaching privacy consequences of two bills, SOPA and PIPA. The bills have many negative aspects. In terms of the privacy impacts, one of the serious consequences is that the right to create and use anonymization software tools would be essentailly

The World Privacy Forum filed extensive comments with the US Department of Health and Human Services about its proposed changes regarding the rules governing human subject medical research. In the comments, WPF noted that the HHS approach to privacy for research subjects was incomplete and did not use all Fair Information Practices. WPF strongly urged HHS to revise its proposal on a number of issues, including consent and the use of biospecimens in research. The World Privacy Forum is urging HHS to acknowledge that the realm of health data that is truly non-identifiable has shrunken remarkably, for example, biospecimens with DNA cannot be considered non-identifiable anymore. “In our comments, we are requesting that HHS give individuals the opportunity to make choices about the use of their own health data and specimens,” said Executive director Pam Dixon. WPF also stated in its comments that “A central database with identifiable information about participants in human subjects research is a terrible idea.” (See p. 21 of WPF comments.)

WPF executive director Pam Dixon testified at a joint subcommittee hearing focused on privacy and the collection and use of online and offline consumer information. Dixon’s testimony focused on the new “modern permanent record” and how it is used and created. Dixon said “The merging of offline and online data is creating highly personalized, granular profiles of consumers that affect consumers’ opportunities in the marketplace and in their lives. Consumers are largely unaware of these profiles and their consequences, and they have insufficient legal rights to change things even if they did know.” The testimony explored concrete examples of problematic consumer profiling activities.