Genetic privacy — Genome-wide association studies present complex and challenging privacy issues. The National Institutes of Health, in a published request for information, asked for public comment on its proposed policy regarding its support and management of a central genomic repository for genome-wide association studies. In comments filed with the National Institutes of Health, the World Privacy Forum raised concerns about the proposed NIH policy in the specific areas of genetic identifiability, secondary uses of the genetic data, oversight, legal protections, and informed consent.
Privacy Act of 1974 — In response to a proposed Department of Homeland Security rulemaking regarding a system of records, the World Privacy Forum filed comments requesting changes. The primary objections are that the proposed system of records commingles records and functions, the proposed exemption is inconsistent with the system notice, and DHS’s proposed exemption from civil remedies was not correct, among other issues. The World Privacy Forum stated in its comments that the Department of Homeland Security should demonstrate its commitment to accountability and transparency in the rulemaking.
Identity theft | medical identity theft — The World Privacy Forum filed comments with the Federal Trade Commission, the Treasury, and other federal agencies today regarding the joint draft rule on “Red Flags” for identity theft. In its comments, the World Privacy Forum requested that medical identity theft be added to several aspects and portions of the proposed rule. Adding medical identity theft to the rule is essential to help close gaps in protection for consumers and to encourage health care providers to attend to victims’ challenges and needs regarding medical identity theft.
Internet privacy — The World Privacy Forum announced today that it would be filing a complaint with the Federal Trade Commission about the posting by AOL of a portion of its users’ search data on the Internet. While the data was not expressly identified by name, the search queries themselves included in some cases personally identifiable information such as individuals’ names, Social Security Numbers, and myriad other personal information. The World Privacy Forum urges consumers to take precautions when using search engines.
Genetic privacy — The collection of DNA material from 500,000 to 1,000,000 or more individuals as part of a large U.S. medical research project raises many challenging ethical, legal, and privacy issues. An advisory committee reporting to the Office of the Secretary of Health and Human Services ( the Secretary’s Advisory Committee on Genetics, Health and Society) has published a detailed analysis of the issues such a project and its associated databases and biobanks would raise in a draft report. The committee’s final report and policy recommendations will be submitted to the Secretary of HHS. The World Privacy Forum has submitted public comments on the draft; the comments include key policy recommendations.