Privacy Gap

World Privacy Forum Comments on Privacy Issues Relating to a Nationwide Genetic Research Project

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.
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, the need to address identifiability issues, and the need for a far-reaching and robust privacy policy that exceeds the requirements of HIPAA, among other recommendations.

World Privacy Forum Comments to HHS on Protecting Patient Choice and Expanding Medical Privacy Rights

Medical privacy — The World Privacy Forum filed comments with Health and Human Services this week asking the agency to protect patient choice and privacy. The World Privacy Forum asked that patients continue to be able to receive accounting of disclosures under HIPAA, and asked that this important patient right under HIPAA not be removed or weakened. The World Privacy Forum also asked HHS to review how patients’ records can be amended under HIPAA, and recommended that in light of the coming National Health Information Network, that changes to enhance patient choice may be needed in this area.

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