FTC Privacy Roundtable — WPF executive director Pam Dixon will testify at the FTC Privacy Roundtable about information brokers and commercial data practices and they impact consumers. Dixon will be discussing the business models of data brokers, issues with smart grids, and opt-out problems, among other issues.
Congressional testimony — 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.
Genetic privacy — The World Privacy Forum presented a talk at the World Congress in Washington D.C. today on the intersection between genetic privacy and marketing, and on genetic issues and medical identity theft. The presentation exposed the list marketing activities surrounding health care data, and examined how the current loopholes in the recently passed Genetic Information Nondiscrimination Act (GINA) would not necessarily ease issues with incidental collection and use of genetic information.
Medical identity theft is a crime that harms people and it is a crime that hides itself. This combination makes medical identity theft an insidious crime. It can cause extraordinary damages and harms to its individual and institutional victims. And once begun, the harmful effects of this crime can linger in the lives of its victims for years or even decades.
Genetic privacy — Executive director Pam Dixon presented key issues and potential solutions regarding privacy and Genome Wide Association Studies at the Institute of Medicine’s Board on Health Sciences Policy meeting. Her presentation included recommendations to engage in a comprehensive study of certificates of confidentiality, to encourage standards of identifiability, to encourage study of what more uniform standards of privacy and security for researchers might look like, and a recommendation to work toward broad solutions that extend beyond GWAS activities.