Public Comments: April 2009 Proposed Rule to Implement Title II of the Genetic Information Nondiscrimination Act of 2008

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 loophole in consumer protection in the 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 as to prevent information leakage through billing and other activities.

When opting out is hard to do: World Privacy Forum sends letter to FTC about data broker companies offering mail-based opt outs

Data broker opt out issue — The World Privacy Forum sent a letter to the Federal Trade Commission asking it to look into four companies offering online consumers the ability to opt out, then asking those consumers to use a variety of postal-mail-based methods to do so.

Public Comments: April 2009 – Request for declaration regarding fairness of opt-out methods and investigation into Acxiom, US Search, PublicRecordsNow, and USA People Search consumer opt-out methods for compliance with Section 5 of the FTC Act, 15 U.S.C. § 45(a)(1)

The Commission has laid down specific examples of what constitutes unreasonable opt- out procedures, particularly in its Affiliate Marketing Rule, which describes three distinct types of opt-out methods the Commission considers to be unreasonable. Some companies are ignoring the standards the Commission has set, and are requiring consumers whom they have notified online of an opt-out opportunity to then use paper and postal mail processes to accomplish the opt out.

Blog Post: Patient’s Guide to HIPAA

New Health Privacy Resource — The Patient’s Guide to HIPAA is the first comprehensive guide to medical privacy written expressly for patients with a practical eye as to how to use the law to protect privacy. It is a major privacy resource for patients, written directly and without legalese. The Patient’s Guide to HIPAA is

World Privacy Forum Publishes A Patient’s Guide to HIPAA, First Comprehensive HIPAA Privacy Guide Written Expressly For Patients

“This guide is not just a retread of what HIPAA is and does,” said Pam Dixon, executive director of the World Privacy Forum. “Our guide gives patients practical details and strategies on how they can use the law to protect their privacy and navigate the medical system. Best of all, it is easy to use.”