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.
Behaviorally targeted advertising | FTC proposed rules — The World Privacy Forum filed comments in response to the Federal Trade Commission’s proposed self-regulatory guidelines for companies targeting online advertising to consumers based on consumer behaviors. The WPF requested a separate, formal rulemaking process for determining how sensitive medical information should be handled online regarding behaviorally targeted advertisements. The WPF also discussed genetic data and requests for genetic tests, and noted that genetic information should be included in any definition of sensitive medical information. The WPF reiterated that the definition of personally identifiable information should include IP address, and encouraged the FTC to work from a rights-based approach regarding online advertising. The WPF also urged the FTC to include all fair information practices in any self-regulatory regime, and to enforce the regime directly.
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.
Ten privacy and consumer groups, including the World Privacy Forum, unveiled a consensus document outlining key consumer rights and protections in the behavioral advertising sector. The document is directed toward the Federal Trade Commission, and urges the FTC to take proactive steps to adequately protect consumers as online and other forms of behavioral tracking and targeting become more ubiquitous. The consensus document was filed with the Secretary of the FTC and its commissioners. Behavioral advertising is the focus of the FTC’s eHavioral Advertising Town Hall meeting taking place November 1-2 in Washington, D.C. The network advertising sector has a self-regulatory plan, the Network Advertising Initiative, in place, and has had this plan in place since 2000. The consensus document addresses the many areas where the NAI plan has failed to protect consumers.
Genetic privacy | SACGHS — The World Privacy Forum gave testimony to the Secretary’s Advisory Committee on Genetics Health and Society regarding privacy issues stemming from direct-to-consumer advertising and consumer-initiated genetic testing. The World Privacy Forum noted that a great deal of consumer health data circulates outside the protections of HIPAA, and a substantial market for this kind of consumer health data already exists. Genetic data about consumers that is acquired outside the clinical context and is not subject to the protections of HIPAA (for example, through consumer-initiated genetic testing) will likely not be any more protected than other forms of consumers’ health-related information from the current demands of the market. However, the consequences of leakage of genetic information about consumers into the marketing stream could have potentially negative consequences for both those consumers and their blood relatives. The World Privacy Forum urged the committee to include specific recommendations about privacy in its upcoming report to the Secretary, and also urged the committee to work with other federal agencies to set up a pre-market oversight structure that includes significant and meaningful privacy protections for genetic testing occurring outside of the protections of HIPAA.