Health Privacy

Genetic privacy — The World Privacy Forum filed comments today with the Department of Labor requesting that the DOL expand its protections of how genetic information may be used by health insurance companies or group health plans. The World Privacy Forum urged the DOL to include genetic information posted on social networking sites in its consideration of the GINA regulations.

Genetic non-discrimination regulations (GINA) — The World Privacy Forum filed comments on proposed regulations for implementing Title I of GINA, the Genetic Non-Discrimination Act. The WPF requested a change to the proposed regulations, asking the Department of Health and Human Services require immediate posting of revised notices of privacy practices on the web sites of affected health plans. Under the proposed regulations, written notice of revised privacy practices to individuals could be delayed due to the cost of postal mailing. The WPF noted that a revised privacy notice posted on a health plan’s web site would not incur postal costs, and that regulated entities should take this minimum step to inform consumers of any changes regarding privacy practices affecting genetic non-discrimination.

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.

Data Breach | HHS HITECH Breach Notification — The World Privacy Forum filed comments on the HHS data breach rulemaking and asked for substantive changes in several areas. In particular, WPF asked HHS to expressly state a requirement for a breach risk assessment in the final rule itself, and to set a requirement that the risk assessment must be conducted by an independent organization. The WPF also asked that HHS set breach risk assessment standards so that there is some uniformity and guidance as to what constitutes an appropriately rigorous risk assessment when a breach occurs. In the comments, WPF also discussed the relationship between medical identity theft and medical data breach and how this impacts patients and consumers.

WPF Red Flag Report — The World Privacy Forum has updated its Red Flag report, Red Flag and Address Discrepancy Requirements: Suggestions for Health Care Providers. The update reflects the new effective date of the Red Flag Rule, (November 1, 2009) and incorporates other minor updates in the text. This report replaces the original Red Flag report published September 2008.