SACGHS | Oversight of genetic testing — The Secretary’s Advisory Committee on Genetics, Health and Society (SACGHS) released its final report on Oversight of Genetic Testing (U.S. System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of Health and Human Services, April 2008, PDF, 276 pages). This is a substantial, thoughtful report that is likely to have a long-term impact on the field. The World Privacy Forum submitted formal written comments regarding this report when it was in draft form, and also appeared before the Committee in person in February of 2008 to discuss additional information relevant to the report. The final report reflects the World Privacy Forum comments and testimony. The report now includes a discussion about Direct to Consumer advertising and marketing as well as related privacy issues. The discussion in the final report also now acknowledges the implications of Direct to Consumer marketing of genetic tests regarding online privacy. The final report also reflects generally increased attention to privacy issues.
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.
Medical identity theft is a crime that harms people and it is a crime that hides itself. This combination makes medical identity theft an insidious crime. It can cause extraordinary damages and harms to its individual and institutional victims. And once begun, the harmful effects of this crime can linger in the lives of its victims for years or even decades.
NHIN update — The National Health Information Network, or NHIN, is part of a major undertaking to digitize and network the health care sector. From electronic health records to multi-state health information hubs, the U.S. government’s goal is to modernize and move health care information from paper to digital. The Department of Health and Human Services is the primary mover behind this initiative, which is complex and multi-faceted. The World Privacy Forum keeps a chronology of NHIN events as a public service. The NHIN timeline has been updated to reflect changes in AHIC, a group that is charged in part with ensuring privacy and confidentiality in the NHIN and other aspects of health care modernization. AHIC is set to transition to a “public-private partnership,” a move that will need to be watched closely to ensure robust consumer involvement.
REAL ID | National ID — The World Privacy Forum and the Electronic Frontier Foundation (EFF) filed joint comments with the Department of Homeland Security about the proposed national ID system, REAL ID. The comments discuss the substantial flaws in the proposed REAL ID system including concerns about the overall structure of the program, the cards, the databases attached to the cards, the lack of controls on “function creep,” the possibilities for discrimination, the potential for increased risk of identity theft, issues related to potential gaps in coverage for recipients on Federal programs, among other issues.