Public Comments

The online tracking and targeting of consumers –– both in its current form and as it may develop in the future –– needs to be limited so that consumers can exercise meaningful, granular preferences based on timely and contextual disclosures that are understandable on whichever devices consumers choose to use. Consumers must be free to act in their own self-interest. Companies engaged in monitoring and tracking must respect consumer privacy by implementing Fair Information Practices,2 and there must be a structure that allows for enforcement of these rights. A right that is selectively enforced, or that is without effective enforcement, is not a meaningful right.

Ten privacy and consumer groups, including the World Privacy Forum, unveiled a consensus document outlining key consumer rights and protections in the behavioral advertising sector. The document is directed toward the Federal Trade Commission, and urges the FTC to take proactive steps to adequately protect consumers as online and other forms of behavioral tracking and targeting become more ubiquitous. The consensus document was filed with the Secretary of the FTC and its commissioners. Behavioral advertising is the focus of the FTC’s eHavioral Advertising Town Hall meeting taking place November 1-2 in Washington, D.C. The network advertising sector has a self-regulatory plan, the Network Advertising Initiative, in place, and has had this plan in place since 2000. The consensus document addresses the many areas where the NAI plan has failed to protect consumers.

Medicare – CMS — The World Privacy Forum filed extensive pubic comments on the substantive changes to the Medicare database release policy that the Centers for Medicare and Medicaid Services (CMS) has proposed in a System of Records Notice. As it currently stands, CMS is planning to release the individually identifiable protected health information of patients in the Medicare database to third parties in some circumstances. CMS has not established strong enough checks and controls on its release policy, and it has not explained how it is able to do this under HIPAA. The comments state that CMS has an obligation to explain how each routine use in its new policy is consistent with the authority in the HIPAA privacy rule. If a routine use allows disclosures that are broader than those permitted by HIPAA, then the routine use must be narrowed so that it is consistent with HIPAA. The comments also note that nothing in the CMS notice discusses substance abuse rules and other legal restrictions of the protected health data. The World Privacy Forum asked CMS to specify that the qualifications of any data aggregators who may potentially receive the data exclude any entity that sells other consumer data for any general business, credit, identification, or marketing purpose.

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.

The World Privacy Forum filed extensive pubic comments on the substantive changes to the Medicare database release policy that the Centers for Medicare and Medicaid Services (CMS) has proposed in a System of Records Notice. As it currently stands, CMS is planning to release the individually identifiable protected health information of patients in the Medicare database to third parties in some circumstances. CMS has not established strong enough checks and controls on its release policy, and it has not explained how it is able to do this under HIPAA. The comments state that CMS has an obligation to explain how each routine use in its new policy is consistent with the authority in the HIPAA privacy rule. If a routine use allows disclosures that are broader than those permitted by HIPAA, then the routine use must be narrowed so that it is consistent with HIPAA. The comments also note that nothing in the CMS notice discusses substance abuse rules and other legal restrictions of the protected health data. The World Privacy Forum asked CMS to specify that the qualifications of any data aggregators who may potentially receive the data exclude any entity that sells other consumer data for any general business, credit, identification, or marketing purpose.