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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.

Medical records privacy and how-to — Following its report on medical identity theft, the World Privacy Forum has responded to the need for specialized advice for victims of medical identity theft. The Access, Amendment, and Accounting of Disclosures: FAQs for Medical ID Theft Victims is the first resource of its kind, and is intended to help victims navigate the complicated process of correcting medical files and recovering from the unique harms of medical identity theft. The FAQ includes sample letters to use, as well as step-by-step advice on how to get a copy of health records, ask for changes to health records from healthcare providers, and ask for a history of disclosures of health records.

Agency comments / Medical privacy — 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.

THE DANGEROUS IMPACT OF MEDICAL IDENTITY THEFT
MEDICAL IDENTITY THEFT, THE CRIME THAT HAS HIDDEN ITSELF ALL TOO WELL
THE VICTIMS’ PERSPECTIVE: LACK OF RECOURSE, LACK OF RIGHTS, AND LACK OF HELP
ELECTRONIC RECORDS, HEALTH NETWORKS, AND THE CHALLENGES MEDICAL IDENTITY THEFT BRINGS TO BOTH MEDICAL IDENTITY THEFT VICTIMS ARE FALLING THROUGH GAPS
BACKGROUND OF THIS REPORT
FINDINGS
RECOMMENDATIONS

-DATA BREACHES AND MEDICAL IDENTITY THEFT
-THE NATIONAL HEALTH INFORMATION NETWORK AND MEDICAL IDENTITY THEFT
-CURRENT AUDIT SYSTEMS DO NOT RESOLVE THE PROBLEM
-DIGITAL SECURITY ISSUES IN THE NHIN AND OTHER HIGHLY DIGITIZED, VIRTUALIZED ENVIRONMENTS
-PHYSICAL SECURITY ISSUES IN A MEDICAL ENVIRONMENT