Uncategorized

Security freeze | identity theft | financial privacy — A credit freeze (sometimes called a security freeze) lets you stop the disclosure of your credit report by a credit bureau. A credit freeze can be especially helpful to individuals who are having persistent problems with identity theft. If you live in a state with a security freeze law, then you may be able to place a security freeze on your files. This World Privacy Forum resource gives general background on security freezes, lists the states with security freeze laws, and links to more information for each state.

FDA privacy standards – RiskMAPs – World Privacy Forum executive director Pam Dixon testified at an FDA/AHRQ joint public workshop about the need for the FDA to set robust privacy standards for drug risk minimization programs, which are put in place for drugs the FDA has determined to be high risk in some way. Drug risk minimization programs (like the iPledge program for the acne drug Accutane) are not typically covered by HIPAA, and some programs have a privacy policy that allows marketing use of patient information collected as part of the risk program. This kind of marketing activity would not be allowable if the programs fell under HIPAA, and Dixon’s testimony stated that patients in these programs should have the same kinds of privacy protections as HIPAA covered programs, and that marketing activities involving patient information should not be allowable in these programs.

Genetic privacy — Executive director Pam Dixon presented key issues and potential solutions regarding privacy and Genome Wide Association Studies at the Institute of Medicine’s Board on Health Sciences Policy meeting. Her presentation included recommendations to engage in a comprehensive study of certificates of confidentiality, to encourage standards of identifiability, to encourage study of what more uniform standards of privacy and security for researchers might look like, and a recommendation to work toward broad solutions that extend beyond GWAS activities.

AHIC – National Health Information Network — The American Health Information Community Workgroup on Confidentiality, Privacy and Security requested public feedback regarding its working hypothesis. WPF responded to the request with public comments encouraging the adoption of a unified policy architecture and encouraging AHIC to focus on enforcement mechanisms that are intended to directly benefit consumers. WPF also encouraged AHIC to look comprehensively at the demands a new national electronic health exchange network will make on privacy in the health care sector.

information will expand greatly in the future. In public comments filed with the National Institutes of Health on pharmacogenomics (PGx) research, or research using genetic information to create highly personalized medicine, the World Privacy Forum recommended that all research activities that involve any type of patient-specific genetic information be required to have certificates of confidentiality, whether that information appears identifiable or not. The WPF also urged the NIH to require strong data use agreements to protect individuals’ privacy. The WPF also urged NIH and the Department of Health and Human Services to reinstate the position of “privacy advocate” so as to provide oversight in this area.