National Committee on Vital and Health Statistics (NCVHS)

ÅWPF files two sets of key comments on HIPAA privacy rule

Health privacy and HIPAA — The World Privacy Forum filed two sets of detailed regulatory comments on recently proposed changes to HIPAA. The first comments focused on proposed changes to HIPAA in the area of marketing patient information. The proposed changes would be harmful to patient privacy, and are contrary to the law. WPF was joined in the marketing comments by the Center for Digital Democracy, Consumer Action, Consumer Federation of America, the Electronic Frontier Foundation, Privacy Activism, Privacy Rights Clearinghouse, and Privacy Times. The second set of comments WPF filed included the comments on marketing as well as on additional provisions that would be problematic if enacted.

WPF Resource Page: Personal Health Records

PHRs have been promoted in recent years as being an empowering panacea of benefits for consumers, but there has been little meaningful discussion of the complex and serious privacy issues PHRs can raise. For example, very few consumers know that not all PHRs are protected by HIPAA, the federal privacy rule that applies to medical files held at, for example, hospitals.

World Privacy Forum files public comments regarding oversight of genetic testing; warns about the privacy risks related to unregulated commercial genetic tests and the need to prevent phantom genetic tests from becoming a new business model for fraudsters

Genetic privacy | SACGHS — The World Privacy Forum filed extensive comments with the Secretary’s Advisory Committee on Genetics, Health and Society (SACGHS) regarding its draft report on genetic testing oversight, U.S. System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of HHS. The World Privacy Forum requested SACGHS pay more attention in its final report to the privacy consequences of unregulated genetic testing that occurs outside the health care sector. The WPF comments note that current and proposed remedies for the misuse of genetic information tend to focus on the use of the information within the health care treatment, payment, and insurance systems. What is crucially important is to analyze how to protect genetic information in the realm of commercial collection, maintenance, use and disclosures. Another area the comments discuss is the potential for new forms of fraudulent activity related to genetic testing (Phantom genetic testing, that is, genetic tests marketed to consumers that are not even real or viable genetic tests.) The World Privacy Forum specifically recommended that the National Committee on Vital and Health Statistics be tasked with looking at this matter, that an independent pre-market assessment mechanism is created for genetic tests offered outside the clinical setting, and that privacy be expressly discussed in the overarching recommendations in the final report.

World Privacy Forum responds to June 2007 NCVHS recommendations to the Secretary of HHS regarding health care information at non-HIPAA covered entities

Medical privacy | NCVHS | HIPAA — The World Privacy Forum has sent a letter to Dr. Simon P. Cohn, Chairman of the National Committee on Vital and Health Statistics, supporting the Committee’s formal conclusion that all entities that create, compile, store, transmit, or use personally identifiable health information should be covered by a federal privacy law. More needs to be done about health care data that is left unprotected by HIPAA. The Forum’s letter included a discussion of two HHS programs that operate outside of HIPAA: FDA RiskMAPS, and the National Institutes of Health, which is not a covered entity under HIPAA.

Public Comments: August 2007 – NCVHS letter Update to privacy laws and regulations required to accommodate NHIN data sharing practice

We particularly note the Committee’s observation that the non-covered entities “may even sell personal health information without authorization for the purpose of marketing or other purposes that consumers may find objectionable.” The World Privacy Forum agrees with the Committee, and believes that the use of identifiable patient health care information for marketing is a disturbing possibility. New institutions are being developed and implemented to exploit gaps in HIPAA that allow use of patient data for marketing purposes. Action to close those gaps is needed urgently. The Committee’s letter is a small step in that direction.