Confidentiality

Cancer data are highly confidential. Improper disclosure of these data could result in emotional, psychological, and financial harm to patients and their families. Therefore, one of the most important responsibilities of cancer registry professionals is to protect the confidentiality of cancer patient information.

At the state level, legislative efforts have been made to improve and protect the confidentiality of cancer data. Specific regulations and laws determine to whom cancer information may be reported, how cancer information is reported, and what procedures should be taken to access cancer information. For example, information identifying a patient is removed when the data are reported. In addition, researchers who need access to cancer data must receive special permission from a designated authority. Each cancer registry may have its own strict policy regarding the way in which files and documents containing confidential information are handled. As a result of such policies and procedures, the privacy of cancer patients is protected.

There are also federal standards to protect the privacy of individually identifiable health information. These standards are included in the HIPAA (the Health Insurance Portability and Accountability Act of 1996) regulations. View the Standards for Privacy of Individually Identifiable Health Information.

Although patient confidentiality is of paramount importance, cancer registries also may implement policies to protect the privacy of physicians and health care facilities.

Updated: December 11, 2023