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U.S. National Institutes of Health
Last Updated: 03/05/10

Privacy and confidentiality

Human specimen collections often contain links to patient identities and other personal information. The privacy and confidentiality of personal information associated with human specimens are important considerations. The NCI sponsored a workshop in 1999 to discuss the issues related to patient privacy and confidentiality in cancer research and developed recommendations for practices that would insure the confidentiality of identifiable data without erecting unnecessary obstacles to the conduct of research. These recommendations are summarized in “Confidentiality, Data Security, and Cancer Research: A Workshop Report, December 1-2, 1999 ” [].

Identifiable data associated with specimens may also be subject to new Department of Health and Human Services (DHHS) regulations on the privacy of medical records, “Standards for Privacy of Individually Identifiable Health Information, ” [].