Today, health insurers Blue Shield of California and Anthem Blue Cross announced the creation of a statewide database of patient medical records in California called Cal INDEX. When it launches later this year, it will be the country’s largest health information exchange, or HIE. The exchange is set to disseminate patient’s longitudinal medical files, and
The World Privacy Forum’s recent public comments to the White House regarding Big Data focus on using a foundation of Fair Information Principles to address issues connected to bias, error, and privacy regarding big data as applied to vulnerable populations. The comments also discuss large medical research data sets, and stress the importance of applying
Chairman Rockefeller and Members of the Committee, thank you for the opportunity to testify today about data brokers, an industry that is often hidden from public view, and the impact of data brokers on consumers’ lives.
Many people have told us that they think opting out is confusing. We agree. Opting out can range from the not-too-difficult (the FTC’s Do Not Call list is a fairly simple opt out) to the challenging (the National Advertising Initiative opt out can be tricky). Our hope is that this list will clarify which opt out does what, and how to go about opting out.
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.