Notice of Proposed Rule-making Comment

World Privacy Forum files comments on proposed genetic discrimination regulations

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.

World Privacy Forum files comments on proposed rules regarding Patient Safety Organizations

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.

World Privacy Forum, NCLC, and Consumer’s Union file extensive comments regarding accuracy of credit reports

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.

Opportunity for public comment on the accuracy of credit reports

Financial privacy | credit reports — Consumers and organizations have an opportunity to submit public comments about the accuracy and integrity of credit reports. Until February 11, the Federal Reserve Board, the Federal Trade Commission and other banking agencies will be accepting comments on their draft rulemaking regarding how creditors and other furnishers provide information to consumer reporting agencies, and which types of direct disputes they must handle. This proposed rulemaking is a key one; it defines what accuracy and integrity of information provided to consumer reporting agencies means, how disputes may be handled directly with the furnishers, and which types of direct disputes furnishers may ignore. The NCLC, Consumer’s Union, and the World Privacy Forum have written a sample letter that may be downloaded and used or modified for the comments. To file your letter, submit your comments to the Board of Governors of the Federal Reserve System by mailing the comments to with the subject line “Docket No. R–1300.”

World Privacy Forum Files Comments About Proposed Changes to HIPAA

Medical privacy | HIPAA — Five groups joined the World Privacy Forum in asking for changes to be made to a proposed rule on how medical healthcare claims attachments are handled electronically. The World Privacy Forum and the EFF, EPIC, Privacy Rights Clearinghouse, Privacy Activism and U.S. Public Interest Research Group (U.S. PIRG) asked that physicians be given more control over what parts of health records they send electronically to insurance companies, that psychotherapy notes not be included when sending health records for insurance payment, and that the HIPAA Privacy Rule be rigorously applied to scanned health records.