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.
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.
Genetic Privacy | GINA — The World Privacy Forum filed comments on the proposed regulations on the Genetic Information NonDiscrimination Act, or GINA. The comments request that the Equal Opportunity Employment Commission close down several potential loopholes in consumer protection in the proposed regulations. The Forum specifically asked the EEOC to consider curtailing the amount of commercially available information employers could access about employees, for example, through marketing databases. WPF also requested that those covered under GINA be required to maintain audit trails in certain circumstances, and urged that wellness programs be structured in such a way so as to prevent information leakage through billing and other activities.
Patient Safety Organizations | Proposed rulemaking — The World Privacy Forum filed extensive comments today regarding privacy protections for patients whose health care information will be shared with patient safety safety organizations under newly proposed Department of Health and Human Services regulations. After a landmark Institute of Medicine report on the prevalence of medical errors and their harmful impact on patients (To Err is Human), the U.S. Congress eventually passed the Patient Safety Act (2005). The Patient Safety Act allows extensive health care data of patients to go to patient safety organizations. The idea is to provide a form of quality control. The Agency for Heathcare Research and Quality (AHRQ), part of HHS, has published its proposed regulations implementing the Act. The World Privacy Forum has made 14 recommendations for substantive changes in the proposed rules to protect patient privacy. The World Privacy Forum asked the Agency to expressly mandate that all patient data be de-identified or anonymized to the greatest extent possible, that the proposed rule should expressly require data use agreements for any data sharing, that the patient information be labeled as subject to the Patient Safety Act, and strongly urged that patient safety organizations be required to maintain an accounting of disclosures at least equal to HIPAA, among other recommendations.
Financial privacy / credit reports — The NCLC, Consumer’s Union, and the World Privacy Forum filed extensive joint comments today regarding the proposed rulemaking, Procedures to Enhance the Accuracy and Integrity of Information Furnished to Consumer Reporting Agencies under Section 312 of the Fair and Accurate Credit Transactions Act. The results of the proposed rulemaking will have a significant impact on how the accuracy of credit reports is defined for consumers, and will have a substantive influence over how consumers may handle credit report disputes directly with those who furnish information for the reports.