Confidentiality Of Data

Whereas:
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