Modern privacy

Congressional testimony — WPF executive director Pam Dixon testified at a joint subcommittee hearing focused on privacy and the collection and use of online and offline consumer information. Dixon’s testimony focused on the new “modern permanent record” and how it is used and created. Dixon said “The merging of offline and online data is creating highly personalized, granular profiles of consumers that affect consumers’ opportunities in the marketplace and in their lives. Consumers are largely unaware of these profiles and their consequences, and they have insufficient legal rights to change things even if they did know.” The testimony explored concrete examples of problematic consumer profiling activities.

Madrid Declaration — A significant civil society document with more than 100 signatories worldwide has been published in conjunction with the 31st annual meeting of the International Conference of Privacy and Data Protection Commissioners. The document, known as the Madrid Declaration, affirms support for the complete canon of fair information practices as expressed by the OECD, affirms support of privacy as a fundamental human right, and warns that “the failure to safeguard privacy jeopardizes associated freedoms, including freedom of expression, freedom of assembly, freedom of access to information, non-discrimination, and ultimately the stability of constitutional democracies.”

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.