Confidentiality Of Data

The burden of cancer on US and Canadian populations is enormous. Nearly everyone in the United States and Canada are affected by the diagnosis, treatment, or care of a family member with cancer;

Population-based cancer surveillance and research are basic and fundamental activities in cancer control, reducing the disparities among populations in early detection, access to care, and receipt of state-of-the-art treatment. Cancer research is a requisite to the discovery of new prevention and treatment strategies, the very activities that will enable success in the war on cancer;

In all states and provinces, newly diagnosed cases of cancer are reportable by law. Cancer patients may not opt out of the registration process

Therefore, it is resolved by NAACCR that:
The integrity of population-based central cancer registries must be maintained as a key resource to protect the public’s health and a key component of the public health surveillance system;
The public health surveillance system must be exempted from restrictions on collection and retention of personal identifying information in medical privacy legislation;

Personal identifiers for all cancer reports must be collected and retained in accordance with laws and regulations in cancer registries regardless of individual consent; and

Data from cancer registries that would allow for the identification of individuals must be protected from disclosure in any legal proceedings or release of data.

Date Passed: 11/17/1999