Public Comments

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.

The World Privacy Forum submitted comments to the Centers for Medicare & Medicaid Services requesting that it amend a Systems of Records Notice to address an oversight and address other privacy issues. The Forum requested that CMS add a reference in the system notice to Executive Order 13181 of December 20, 2000, “To Protect the Privacy of Protected Health Information in Oversight Investigations.” The Forum also requested that the routine uses be revised to reflect the HIPAA requirements as appropriate when the disclosures involve HIPAA records.

EPIC filed comments with the Department of Commerce, which the World Privacy Forum joined. The Office of Technology and Electronic Commerce solicited comments on the development and implementation on “cross-border privacy rules” in the Asia PacificEconomic Cooperation Group (APEC). Seven groups submitted the comments on behalf of civil society organizations (CSO) in the United States concerned about privacy in order to urge the strengthening of privacy rules in the Asia Pacific Economic Cooperation Group.

The proposed changes to the regulations represent an important effort to increase taxpayers’ awareness of what is done with their personal information. However, the updated regulations fail to adequately safeguard taxpayer privacy because they neglect to protect information once it is disclosed, allow consent that is less than voluntary, and carry penalties that are not harsh enough to ensure tax return preparers obey the law.

The World Privacy Forum joined a coalition of 41 civil liberties, privacy, and trans-political organizations in a letter requesting a thorough and comprehensive inquiry by the Committee on the Judiciary into domestic surveillance program(s).