World Privacy Forum urges more clarification and privacy protection regarding “incidental collection” of genetic information in GINA

GINA – Genetic Information Nondiscrimination Act — In comments regarding the recently passed GINA (Genetic Information Nondiscrimination Act), the World Privacy Forum said that some aspects of GINA need clarification to enhance privacy. 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.”

Keep my genes private: World Congress panel presentation

Genetic privacy — The World Privacy Forum presented a talk at the World Congress in Washington D.C. today on the intersection between genetic privacy and marketing, and on genetic issues and medical identity theft. The presentation exposed the list marketing activities surrounding health care data, and examined how the current loopholes in the recently passed Genetic Information Nondiscrimination Act (GINA) would not necessarily ease issues with incidental collection and use of genetic information.

FTC reports more than 145 million telephone numbers are in the National Do Not Call Registry

Do Not Call Registry — In its fourth annual report to Congress on the Do Not Call Registry, the Federal Trade Commission released some interesting new statistics. As of September 2007, there were 145,498,656 telephone numbers in the Do Not Call Registry. The FTC also reported that 6,242 entities paid over $21 million for access to the DNC Registry in 2007. The report also details the FTC’s enforcement actions against businesses violating the DNC Registry rules. As of September 30, 2007, the FTC had filed 25 cases regarding DNC Registry violations and had settled 22 of the cases.