In response to a Request for Information (RFI) from U.S. federal agencies regarding the recently passed GINA (Genetic Information Nondiscrimination Act), the World Privacy Forum filed a detailed response with suggestions on what aspects of GINA need clarification. The comments focus on a number of privacy issues the RFI raised, including model privacy notices and the issue of what the GINA statute calls “incidental collection” of genetic information. Currently, GINA states that some kinds of information are exempted from being considered as regulated for medical underwriting purposes. For example, medical information gleaned about patients for underwriting purposes from medical databases is regulated. But medical information gleaned about patients for underwriting purposes from, for example, marketing lists containing robust patient information may be unregulated if the law is not clarified in the regulatory process. The World Privacy Forum urged HHS and the Department of Labor to substantially clarify what constitutes “incidental collection,” and urged the agencies to consider lists containing identifiable patient information to be considered in the same category as a “medical database.”

HITSP — World Privacy Forum executive director Pam Dixon was elected to be the consumer representative on the HITSP board (Health Information Technology Standards Panel). HITSP is a national standards-setting body that is part of ANSI (The American National Standards Institute) and is working on specifications and standards for the National Health Information Network. The term will begin in January of 2009.

Telemarketing | Top Ten Opt Out List — Beginning today, pre-recorded telemarketing phone calls must come with an easy opt-out for consumers. If a pre-recorded telemarketing call is left on an answering machine, it must also include opt-out information. These rules will apply to telemarketers already subject to the Federal Trade Commission’s Telemarketing Sales Rule and Do Not Call List. There are some exemptions to the rule. For more details about the changes, see our Top Ten Opt Out List, which has been updated with the new information.

Employment kiosks – small, mobile ATM-like booths – are increasingly being used for screening job applicants. All too frequently, the kiosks do not come equipped with the most important thing of all: a privacy policy.

In order to have a meaningful privacy discussion about kiosk issues, it is important to first address some general questions.