Public Policy

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 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 report; the comments include key policy recommendations. The Forum’s recommendations include the need to provide protection from compelled disclosure of information, the necessity for a full-time project privacy officer with enforcement power, and the need for a far-reaching and robust privacy policy that exceeds the requirements of HIPAA, among other recommendations.

In its first report on this subject published in February 2005, The World Privacy Forum documented that 96 known imposter domains existed, with 50 of those domains active and online. In its new study, “Call Don’t Click Update: Still be smart about ordering Federally mandated free credit reports,” the World Privacy Forum has found that 233 known imposter sites now exist, with 112 of the imposter domains active and online. This marks a 124 percent increase in known, active imposter domains since February.

The World Privacy Forum and the Electronic Frontier Foundation submitted comments in response to the U.S. government’s “Request for Information” about its plan to digitize all patient medical records and create an electronic “National Health Information Network” or NHIN. The comments urge caution in designing the NHIN and call for the government to build privacy, security, and open source technologies into the system from the beginning of the project.

Workplace privacy | ID cards | Biometrics — WPF, EFF, Privacy Rights Clearinghouse, and PrivacyActivism call for greater attention to privacy provisions of the proposed new Federal ID card, which will be “contactless.”