Consumer Privacy

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.

The National Advertising Initiative: Difficulties with the NAI

Roadmap: The National Advertising Initiative – Failing at Consumer Protection and at Self-Regulation: Difficulties with the NAI

When people sit at their computers and browse for new car information or to learn about the latest treatment for diabetes, when people walk down the street reading stock quotes on their mobile phones, and when people text a response for more information based on a television commercial they saw, their actions speak louder than words. A new realm of consumer tracking has grown up to translate these activities into advertisements. This kind of advertising is behaviorally targeted advertising. Behaviorally targeted advertising is as controversial as it is lucrative.

The National Advertising Initiative: The Beginnings of the NAI

In 1999, when online advertising was still a fresh segment of the advertising sector, widespread concerns arose about the ways that consumers could be tracked and targeted online for advertising purposes. The Federal Trade Commission held a workshop on online profiling in November 1999. [6] The concerns of the day were distilled in a FTC report to Congress in June 2000, Online Profiling: A Report to Congress. In that report, the FTC found that online profiling presented privacy problems for consumers. The FTC found that online profiling was primarily accomplished through banner ads, cookies, and web bugs, also called web beacons. [7] The Commission also concluded that online profiling was largely invisible to consumers: