World Privacy Forum comments about the ethical, legal, and social implications of using genetic health care data in electronic health records

Genetic Privacy — The World Privacy Forum filed public comments with the Department of Health and Human services in response to an HHS request for information regarding the use of patients’ genetic data for research, health care, and for use in electronic health records. The World Privacy Forum is requesting that HHS use all Fair Information Principles in any personalized health care projects, and is requesting that a formal ELSI (ethical, legal, and social implications) committee be set up to oversee any projects, among other requests.

WPF comments on proposed guidance on Confidential Information Protection and Efficiency Act of 2002 (CIPSEA)

e-Government /CIPSEA — The World Privacy Forum submitted comments to the Office of Management and Budget regarding proposed guidance on Title V of the e-Government Act. The proposed guidance did not address the relationship between CIPSEA and the USA PATRIOT Act Section 215, and guidance regarding identifiability and the Privacy Act of 1974 needs to be further refined. WPF suggests that OMB consider developing a formal statistical confidentiality seal controlled by a federal agency. The purpose would be to provide an identifiable marker that would tell individuals if the information they provide will receive the highest degree of confidentiality protection available under law.

FTC to Conduct New Identity Theft Survey; World Privacy Forum Submits Comments

Identity theft — The World Privacy Forum submitted comments in response to the Federal Trade Commission’s request for feedback on its upcoming identity theft survey. The FTC identity theft survey is one of the most quoted surveys on the subject. The World Privacy Forum requested changes and clarifications to the survey, including adding questions about security breach notices and clarifying existing questions about medical identity theft, among other issues.

World Privacy Forum Testifies on Electronic Health Records and Privacy

Medical privacy — The World Privacy Forum testified before the National Committee on Vital Health Statistics in August regarding the importance of patient choice in the area of Electronic Health Records. The testimony stressed the importance of building security, patient privacy, and choice into EHRs and any form of the proposed National Health Information Network (NHIN).