Public Comments

Public Comments: February 2007 – WPF comments about the ethical, legal, and social implications of using genetic health care data in electronic health records

The World Privacy Forum filed public comments with the Department of Health and Human services in response to an HHS request for information regarding the use of patients’ genetic data for research, health care, and for use in electronic health records. The World Privacy Forum is requesting that HHS use all Fair Information Principles in any personalized health care projects, and is requesting that a formal ELSI (ethical, legal, and social implications) committee be set up to oversee any projects, among other requests.

Public Comments: January 2006 – President’s Identity Theft Task Force: World Privacy Forum requests that medical identity theft be added to task force agenda

The World Privacy Forum filed comments and recommendations with the President’s Identity Theft Task Force. The task force’s draft report and recommendations did not include or contemplate medical identity theft solutions for victims; the WPF has requested and recommended that this be corrected. Medical identity theft victims need more help, more recourse, and agency attention.

Public Comments: December 2006 – Confidential Information Protection and Efficiency Act of 2002 (CIPSEA)

The World Privacy Forum submitted comments to the Office of Management and Budget regarding proposed guidance on Title V of the e-Government Act. The proposed guidance did not address the relationship between CIPSEA and the USA PATRIOT Act Section 215, and guidance regarding identifiability and the Privacy Act of 1974 needs to be further refined. WPF suggests that OMB consider developing a formal statistical confidentiality seal controlled by a federal agency. The purpose would be to provide an identifiable marker that would tell individuals if the information they provide will receive the highest degree of confidentiality protection available under law.

Public Comments: December 2006 – Medical privacy / Medicare Part D World Privacy Forum Requests That CMS Bring Its Medicare Part D Data Activities Under HIPAA and Require Certificates of Confidentiality to Protect Patient Privacy

In comments filed with the Centers for Medicare and Medicaid Services, the World Privacy Forum requested that CMS give effect to data restrictions that Congress has expressly included in the law. WPF also requested that CMS include in its standard agreements for use of CMS data a requirement that the recipient obtain a certification of confidentiality for all identifiable CMS data. WPF also requested that CMS perform a regulatory impact analysis and publish a system of records notice.

Public Comments: November 2006 – Privacy Act of 1974 Department of Justice Proposes Making Changes to Routine Uses of its Systems and Databases; World Privacy Forum Files Comments on Problematic Privacy Act Issues with the Proposed Changes

The Department of Justice published a notice proposing to update the Routine Uses of its systems and databases under the Privacy Act of 1974. The proposal was not precise enough, and was written in such a way as to allow sensitive Privacy Act systems such as the Criminal Division Witness Security File (CRM-002), the Witness Immunity Records (CRM-022), and the National Instant Criminal Background Check System (NICS, FBI-018) to be disclosed to almost anyone in certain circumstances, including to individuals working outside of law enforcement. The World Privacy Forum is requesting that the DOJ significantly tighten its language in the proposal, and to specify what individuals or entities may have access to these sensitive records, under what specific conditions. The World Privacy Forum is also requesting the DOJ republish all of its up-to-date system of records notices in their entirety immediately and at least every two years thereafter. Read the comments (PDF).